Wednesday, July 5, 2017
Contemplation
Laying here trying to sleep and as usual, I am unable to shut off my mind. It is always swirling a million miles an hour. Life has been quite the challenge over the last few years, and a lot of the challenges brought on this last year, were of my own doing. Every night, I lay in bed and contemplate where do I go from here. Some days the answer seems clear. Others, not so much. So I just try to make it one day at a time. What else can a girl do. Goodnight (I hope).
Thursday, February 18, 2016
My life as a special needs Mom
I love how I FINALLY jumped on the blogging bandwagon to write ONE blog post! haha! Hey, I'm a busy mom! I ALWAYS have something major going down with one of my 5.5 kids (kid .5, is a topic for a future blog post)! The latest thing is why I am writing this post. I have to get it all outside of my head out of fear it may explode! So, here it goes!
We have always known our Jonathan was a special boy. He has always been advanced and hit most major milestones early. Besides walking, but that was due to a physical impairment, a clubbed foot. Anyone that I have been friends with for awhile has witnessed his awesomeness and intelligence. I recently found a video recording I have of him at the age of 1 1/2 counting to 15.... we didn't even know he could count at that point, muchness to 15! At the age of 2 we would be in the car going somewhere and a song would come on the radio and our TODDLER would shout out the name of the artist! I have a teenager that doesn't even know things like that! I began to realize that this was one smart little boy! I picked up a cheap package of presidential flash cards and within 2-3 months our 2 year old had the presidents memorized! He was obsessed with them for quite a while. So much so that for Christmas when he was 3 he got a wind up Barrack Obama and Mitt Romney in his Christmas stocking. haha. When he was 3 years old his dad taught his 6 year old sister how to ride her bicycle without training wheels! So of course Jonathan had to one up her! He was riding a 2 wheel bike a few weeks after her at the age of 3! It freaked me out!!!! I have never heard of anyone riding a bike without training wheels that young!
He has always gone through different spells where he would be obsessed on one particular topic or thing. His latest obsessions have been: Ventriloquist dummies, he now owns 4. For the past year he has been hooked on The Weather Channel. He loves natural disasters. We were at the dentist this past fall and J needed to get a filling. The hygienist asked what he would like to watch on the TV. His response was "The Weather Channel. The hurricane is going to make it to landfall soon" & he wanted to see it's progress. He is fascinated by tsunamis and also by sink holes. He is also now an avid fan of the television show "Diners, Drive-In's, & Dives. He has also taken control of my iPad, much to my chagrin, and is constantly doing "research" on various topics. The past few weeks it has been on The Titanic!
With all of the awesome stuff comes some negative things too. He likes a routine. He likes certain foods (he HAS to have fruit snacks, 2 packs of them, after school EVERYDAY! His favorite color is blue so pretty much everything has to be blue! He is strong willed and can at times seem defiant. He is prone to throw fits at home if he doesn't get his way or if he perceives that someone is doing wrong by him. He also has a lot of irrational fears/anxiety. He has a hard time working independently. He needs constant reassurance because he always doubts himself and lacks self-esteem. He doesn't do well socially either. He has also had some difficulty in school this year. Given all of this, we finally came to the decision that we needed to have testing done on him to get a definitive answer as to what is going on with him. Really though, we have known the answer since he was 2/3. I think we were just in denial and didn't want him stuck with some label for the rest of his life.
We started the testing process in November of this past year. We just completed the final step in the process last Friday and received the results yesterday. He tested positive for Asperger's Syndrome/High Functioning Autism.
Although in the back of my mind I KNEW, something about seeing it right there in black and white made it suddenly real! It has hit me hard! I know that as a mother I have this irrational sense of responsibly. Like it is MY fault. I KNOW this isn't so, but at times I still feel like I have failed my children in some way. Irrational!
Blog within a blog:
My first born child:
I was down and having a pity party for myself yesterday. My entire life, all I wanted, was to be a wife and a mother. I wanted babies SO bad! I was shocked, yet extremely excited when I found out I was pregnant with my oldest. That excitement didn't last long and was quickly replaced with fear! I started having complications very shortly after finding out I was pregnant. I was placed on bedrest for the first trimester. Zak was born on 12/11/98, almost one week before my due date. He was 8 lbs. 4 oz. He was absolutely perfect, or so it seemed, and I instantly fell madly in love! We very quickly found out that he was born with a birth defect. He had a cleft palate! That made things a bit more complicated. It was difficult to feed him. I really tried to breastfeed him and did so for about 2 weeks along with supplements. I met with a lactation specialist and tried everything, but because he had such a weak suck when eating, my milk never came in. He dropped a couple of pounds and then the doctor prescribed high calorie formula for him. We also had to add some rice cereal in with the formula for the added calories and the thickness. He still struggled to eat and to gain weight. We were told that if he didn't start making progress and if he didn't weigh 10 lbs. by the 3 month mark they would send us to Chicago to have a feeding tube put in. Thankfully, he hit the 10 pound goal with a week or so to spare! We were told that he would only need to have one operation to fix his palate. He ended up having 3 palate surgeries at 9 months, 2 1/2 years, and again at 7 years. He also had to have tubes placed in his ears twice, due to fluid build up in his ears as a result of the cleft. He has also needed to have several teeth pulled and had to have braces due to the defect. He started speech therapy at 1 1/2 years of age and continued through elementary school. He cannot blow his nose because the palate doesn't have normal muscle function. He also does not have an uvula. He also has a weak gag reflex, which is a cool party trick! haha. He has also had allergies and asthma triggered by his allergies. For the most part he is now a happy and healthy 17 year old!
Baby number 2:
In January, 2005, I found out I was expecting again! I was so happy! I had been wanting another baby for many years, but had difficultly getting pregnant. Again, I started experiencing problems and was placed on bed rest for the first trimester. I was almost 3 months pregnant and went in for an ultrasound expecting everything to be fine. I went through all this stuff with my first pregnancy, so I expected and had faith that everything would be ok. I forgot to mention that I had an earlier ultrasound and at that one they told us that it appeared that we had two sacks, however one of them looked like it was being absorbed. At this second ultrasound we found out that there was now only one sack and that our baby had stopped developing weeks before and I was only measuring 6 weeks. The doctor decided to do a D & C to remove what was left behind. That was absolutely devastating to me. I honestly felt like I would never feel like myself again. Oh, and ironically enough, my sister had lost her daughter 6 months into her pregnancy, on the same date, February 27th EXACTLY 3 years before me. We share the same anniversary for one of the saddest moments in our lives!
We tried to conceive again for a couple of years and finally came to the conclusion that this must not be how God intended for us to have more children. So we made the decision to become foster parents. Our three middle children were placed in our home in June of 2007. We were eventually able to adopt them in May, 2010.
Baby number 3:
Of course, like you hear happen SO often, 6 months after our middle three children came to live with us, I got pregnant! This time we waited until I was almost through the first trimester to tell everyone. I felt like I was holding my breath for 9 months! I was afraid to be happy or to allow myself to get excited. We had our 20 week ultrasound on April Fools Day! This one was a 3D ultrasound. Since I had a history of pregnancy complications and because my oldest was born with a birth defect, they did more in depth testing. Evidently, if you have a child born with a cleft palate you have 3 times greater chance of having another one born with that defect. Good news was that he did not have a cleft palate. However, the doctor asked me while he was doing the ultrasound if I had ever lived by a landfill or a nuclear power plant. I kinda chuckled and said "no". I guess this was his way of segueing into telling us that our baby had a clubbed foot! He basically told us that my difficulty in conceiving, maintaining a pregnancy, and that both of my boys, despite having different fathers, had birth defects meant that at some point I must have been exposed to something that caused these issues. Right there we made the decision that this would be the last baby we would have. Unlike my previous pregnancies, the first trimester was fairly uneventful and for that I was grateful! Unfortunately I started going into preterm labor at 26 weeks! Thankfully they were able to stop it. However, I went into preterm labor 2 more times! Thankfully they were able to stop it all 3 times. I gave birth to Jonathan on 8/16/08 a week and a half early. He was 7 lbs. 11 ounces. Other than his clubbed foot he was healthy! He had a series of casts and leg and feet braces for a year. He also had to have one operation on his foot. Once we started taking him to the dentist we found out that the enamel on his teeth didn't form right in utero and he is very likely to get cavities. This has been true! He has had several cavities and even had to have a tooth pulled this past fall. Like his big brother, Jonathan has allergies and asthma triggered by his allergies.
Now we go back to my original reason behind writing this blog:
Now this week we find out Jonathan has Asperger's Syndrome! Because of this and ALL of the history listed above, I was feeling sad, discourage, guilty....etc. I just cannot wrap my mind around how all of this happens to my babies! I was "that" mom... I did EVERYTHING I was supposed to when I was pregnant. I didn't even drink caffeine!!!!!! Yet my children have had all this! They have collectively undergone 8 operations due to birth defects and a tonsillectomy. So as mom I take all they have been through and blame myself. I feel sorry for myself for never getting to experience a "normal" baby. It's not fair! Like I said I was having a MAJOR pity party!
That is then when God put some scriptures on my heart: "You are fearfully and wonderfully made", "For I know the plans I have for you", "For I knew you before I formed you in your mothers womb" "I created you in MY image"...... That hit me hard! Here I am feeling sad for myself, for my children. I should feel blessed to have my children when so many out there cannot. I should feel honored that GOD chose ME to be their mother! God doesn't make mistakes. He has a plan for these boys! He has had a plan for them long before He gave them to me.
I was talking to my Dad about all of this the other day and kind of jokingly said that "God must think I am a strong woman"! To which my dad replied you are a strong woman! I am strong because He made me strong! I am strong because ALL of my kids need me to be strong! God knew all 5 of my children would need me and I need to be a strong Godly woman to advocate on their behalf. To make sure ALL of their special needs get met! Not just their physical needs, but also their emotional and spiritual needs. I pray that instead of feeling pity and showing them doubt and fear and lack of faith that I can show them how to be strong and how to cast all of their cares upon God! I know He has great plans for them all and I want them to always know that too!
We have always known our Jonathan was a special boy. He has always been advanced and hit most major milestones early. Besides walking, but that was due to a physical impairment, a clubbed foot. Anyone that I have been friends with for awhile has witnessed his awesomeness and intelligence. I recently found a video recording I have of him at the age of 1 1/2 counting to 15.... we didn't even know he could count at that point, muchness to 15! At the age of 2 we would be in the car going somewhere and a song would come on the radio and our TODDLER would shout out the name of the artist! I have a teenager that doesn't even know things like that! I began to realize that this was one smart little boy! I picked up a cheap package of presidential flash cards and within 2-3 months our 2 year old had the presidents memorized! He was obsessed with them for quite a while. So much so that for Christmas when he was 3 he got a wind up Barrack Obama and Mitt Romney in his Christmas stocking. haha. When he was 3 years old his dad taught his 6 year old sister how to ride her bicycle without training wheels! So of course Jonathan had to one up her! He was riding a 2 wheel bike a few weeks after her at the age of 3! It freaked me out!!!! I have never heard of anyone riding a bike without training wheels that young!
He has always gone through different spells where he would be obsessed on one particular topic or thing. His latest obsessions have been: Ventriloquist dummies, he now owns 4. For the past year he has been hooked on The Weather Channel. He loves natural disasters. We were at the dentist this past fall and J needed to get a filling. The hygienist asked what he would like to watch on the TV. His response was "The Weather Channel. The hurricane is going to make it to landfall soon" & he wanted to see it's progress. He is fascinated by tsunamis and also by sink holes. He is also now an avid fan of the television show "Diners, Drive-In's, & Dives. He has also taken control of my iPad, much to my chagrin, and is constantly doing "research" on various topics. The past few weeks it has been on The Titanic!
With all of the awesome stuff comes some negative things too. He likes a routine. He likes certain foods (he HAS to have fruit snacks, 2 packs of them, after school EVERYDAY! His favorite color is blue so pretty much everything has to be blue! He is strong willed and can at times seem defiant. He is prone to throw fits at home if he doesn't get his way or if he perceives that someone is doing wrong by him. He also has a lot of irrational fears/anxiety. He has a hard time working independently. He needs constant reassurance because he always doubts himself and lacks self-esteem. He doesn't do well socially either. He has also had some difficulty in school this year. Given all of this, we finally came to the decision that we needed to have testing done on him to get a definitive answer as to what is going on with him. Really though, we have known the answer since he was 2/3. I think we were just in denial and didn't want him stuck with some label for the rest of his life.
We started the testing process in November of this past year. We just completed the final step in the process last Friday and received the results yesterday. He tested positive for Asperger's Syndrome/High Functioning Autism.
Although in the back of my mind I KNEW, something about seeing it right there in black and white made it suddenly real! It has hit me hard! I know that as a mother I have this irrational sense of responsibly. Like it is MY fault. I KNOW this isn't so, but at times I still feel like I have failed my children in some way. Irrational!
Blog within a blog:
My first born child:
I was down and having a pity party for myself yesterday. My entire life, all I wanted, was to be a wife and a mother. I wanted babies SO bad! I was shocked, yet extremely excited when I found out I was pregnant with my oldest. That excitement didn't last long and was quickly replaced with fear! I started having complications very shortly after finding out I was pregnant. I was placed on bedrest for the first trimester. Zak was born on 12/11/98, almost one week before my due date. He was 8 lbs. 4 oz. He was absolutely perfect, or so it seemed, and I instantly fell madly in love! We very quickly found out that he was born with a birth defect. He had a cleft palate! That made things a bit more complicated. It was difficult to feed him. I really tried to breastfeed him and did so for about 2 weeks along with supplements. I met with a lactation specialist and tried everything, but because he had such a weak suck when eating, my milk never came in. He dropped a couple of pounds and then the doctor prescribed high calorie formula for him. We also had to add some rice cereal in with the formula for the added calories and the thickness. He still struggled to eat and to gain weight. We were told that if he didn't start making progress and if he didn't weigh 10 lbs. by the 3 month mark they would send us to Chicago to have a feeding tube put in. Thankfully, he hit the 10 pound goal with a week or so to spare! We were told that he would only need to have one operation to fix his palate. He ended up having 3 palate surgeries at 9 months, 2 1/2 years, and again at 7 years. He also had to have tubes placed in his ears twice, due to fluid build up in his ears as a result of the cleft. He has also needed to have several teeth pulled and had to have braces due to the defect. He started speech therapy at 1 1/2 years of age and continued through elementary school. He cannot blow his nose because the palate doesn't have normal muscle function. He also does not have an uvula. He also has a weak gag reflex, which is a cool party trick! haha. He has also had allergies and asthma triggered by his allergies. For the most part he is now a happy and healthy 17 year old!
Baby number 2:
In January, 2005, I found out I was expecting again! I was so happy! I had been wanting another baby for many years, but had difficultly getting pregnant. Again, I started experiencing problems and was placed on bed rest for the first trimester. I was almost 3 months pregnant and went in for an ultrasound expecting everything to be fine. I went through all this stuff with my first pregnancy, so I expected and had faith that everything would be ok. I forgot to mention that I had an earlier ultrasound and at that one they told us that it appeared that we had two sacks, however one of them looked like it was being absorbed. At this second ultrasound we found out that there was now only one sack and that our baby had stopped developing weeks before and I was only measuring 6 weeks. The doctor decided to do a D & C to remove what was left behind. That was absolutely devastating to me. I honestly felt like I would never feel like myself again. Oh, and ironically enough, my sister had lost her daughter 6 months into her pregnancy, on the same date, February 27th EXACTLY 3 years before me. We share the same anniversary for one of the saddest moments in our lives!
We tried to conceive again for a couple of years and finally came to the conclusion that this must not be how God intended for us to have more children. So we made the decision to become foster parents. Our three middle children were placed in our home in June of 2007. We were eventually able to adopt them in May, 2010.
Baby number 3:
Of course, like you hear happen SO often, 6 months after our middle three children came to live with us, I got pregnant! This time we waited until I was almost through the first trimester to tell everyone. I felt like I was holding my breath for 9 months! I was afraid to be happy or to allow myself to get excited. We had our 20 week ultrasound on April Fools Day! This one was a 3D ultrasound. Since I had a history of pregnancy complications and because my oldest was born with a birth defect, they did more in depth testing. Evidently, if you have a child born with a cleft palate you have 3 times greater chance of having another one born with that defect. Good news was that he did not have a cleft palate. However, the doctor asked me while he was doing the ultrasound if I had ever lived by a landfill or a nuclear power plant. I kinda chuckled and said "no". I guess this was his way of segueing into telling us that our baby had a clubbed foot! He basically told us that my difficulty in conceiving, maintaining a pregnancy, and that both of my boys, despite having different fathers, had birth defects meant that at some point I must have been exposed to something that caused these issues. Right there we made the decision that this would be the last baby we would have. Unlike my previous pregnancies, the first trimester was fairly uneventful and for that I was grateful! Unfortunately I started going into preterm labor at 26 weeks! Thankfully they were able to stop it. However, I went into preterm labor 2 more times! Thankfully they were able to stop it all 3 times. I gave birth to Jonathan on 8/16/08 a week and a half early. He was 7 lbs. 11 ounces. Other than his clubbed foot he was healthy! He had a series of casts and leg and feet braces for a year. He also had to have one operation on his foot. Once we started taking him to the dentist we found out that the enamel on his teeth didn't form right in utero and he is very likely to get cavities. This has been true! He has had several cavities and even had to have a tooth pulled this past fall. Like his big brother, Jonathan has allergies and asthma triggered by his allergies.
Now we go back to my original reason behind writing this blog:
Now this week we find out Jonathan has Asperger's Syndrome! Because of this and ALL of the history listed above, I was feeling sad, discourage, guilty....etc. I just cannot wrap my mind around how all of this happens to my babies! I was "that" mom... I did EVERYTHING I was supposed to when I was pregnant. I didn't even drink caffeine!!!!!! Yet my children have had all this! They have collectively undergone 8 operations due to birth defects and a tonsillectomy. So as mom I take all they have been through and blame myself. I feel sorry for myself for never getting to experience a "normal" baby. It's not fair! Like I said I was having a MAJOR pity party!
That is then when God put some scriptures on my heart: "You are fearfully and wonderfully made", "For I know the plans I have for you", "For I knew you before I formed you in your mothers womb" "I created you in MY image"...... That hit me hard! Here I am feeling sad for myself, for my children. I should feel blessed to have my children when so many out there cannot. I should feel honored that GOD chose ME to be their mother! God doesn't make mistakes. He has a plan for these boys! He has had a plan for them long before He gave them to me.
I was talking to my Dad about all of this the other day and kind of jokingly said that "God must think I am a strong woman"! To which my dad replied you are a strong woman! I am strong because He made me strong! I am strong because ALL of my kids need me to be strong! God knew all 5 of my children would need me and I need to be a strong Godly woman to advocate on their behalf. To make sure ALL of their special needs get met! Not just their physical needs, but also their emotional and spiritual needs. I pray that instead of feeling pity and showing them doubt and fear and lack of faith that I can show them how to be strong and how to cast all of their cares upon God! I know He has great plans for them all and I want them to always know that too!
Thursday, February 19, 2015
Jumping on the Bandwagon.... Finally!
So, I have been considering starting a blog for quite a while now. God knows there is enough in my head to fill up a blog, or a book for that matter!
What's on my mind today? A news story I saw on The Today Show about a woman who wrote an essay about being fat and happy. I TOTALLY get what she is saying! Skinny is hard! I had to KILL myself to lose 80 lbs. I was happy to be able to fit into cute clothes that were actually trendy. It was also great to be able to do things with my kids like going on long walks, roller blading, going down waterslides (because when I was fat you couldn't pay me enough to do that)! There were also draw backs to my healthy, skinny life. I had people in my house angry with me for not having junk food in the house. I didn't buy it because if I did I would eat it! I decided enough was enough on a weekend of camping when my kids ganged up on me and told me they wished I was fat again. They missed going out for ice cream, having junk food in the house, etc... They said that I was "more fun" when I was fat. I eased up on things and before I knew it I gained 40 lbs. back! I am heavier and unhappy with my appearance... again! There is definitely a certain level of happiness and freedom that comes from living more carefree, but there are also many drawbacks too! I'm sad when I go shopping! I hate that it is so hard to find cute clothes. I have a love/hate relationship with food. I feel the weight on my body too! My joints are sore. Working out is hard.
There is a point to all my ramblings.... There is misery being fat and misery being skinny. The key is balance! I am working on my weight again, however I'm not going crazy and eliminating all things tasty (aka: bad for you) from my diet. I try to give myself some sort of guilty pleasure everyday or every other day. Last night I indulged in 8 butterfinger bites for 190 calories. I was still within my calorie goal for the day and my craving was satisfied! I am not losing massive amounts of weight on a weekly basis. I am losing about a pound a week. But I AM LOSING! Yay! I have energy again! I feel great! Isn't that the goal.
Thanks for reading! Here is the link to the story that was on The Today Show. http://www.today.com/health/meet-joni-edelman-mom-5-who-says-im-much-happier-2D80500771
What's on my mind today? A news story I saw on The Today Show about a woman who wrote an essay about being fat and happy. I TOTALLY get what she is saying! Skinny is hard! I had to KILL myself to lose 80 lbs. I was happy to be able to fit into cute clothes that were actually trendy. It was also great to be able to do things with my kids like going on long walks, roller blading, going down waterslides (because when I was fat you couldn't pay me enough to do that)! There were also draw backs to my healthy, skinny life. I had people in my house angry with me for not having junk food in the house. I didn't buy it because if I did I would eat it! I decided enough was enough on a weekend of camping when my kids ganged up on me and told me they wished I was fat again. They missed going out for ice cream, having junk food in the house, etc... They said that I was "more fun" when I was fat. I eased up on things and before I knew it I gained 40 lbs. back! I am heavier and unhappy with my appearance... again! There is definitely a certain level of happiness and freedom that comes from living more carefree, but there are also many drawbacks too! I'm sad when I go shopping! I hate that it is so hard to find cute clothes. I have a love/hate relationship with food. I feel the weight on my body too! My joints are sore. Working out is hard.
There is a point to all my ramblings.... There is misery being fat and misery being skinny. The key is balance! I am working on my weight again, however I'm not going crazy and eliminating all things tasty (aka: bad for you) from my diet. I try to give myself some sort of guilty pleasure everyday or every other day. Last night I indulged in 8 butterfinger bites for 190 calories. I was still within my calorie goal for the day and my craving was satisfied! I am not losing massive amounts of weight on a weekly basis. I am losing about a pound a week. But I AM LOSING! Yay! I have energy again! I feel great! Isn't that the goal.
Thanks for reading! Here is the link to the story that was on The Today Show. http://www.today.com/health/meet-joni-edelman-mom-5-who-says-im-much-happier-2D80500771
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