Nick and I are truly humbled and completely blown away by the amount of support shown and given to us thus far. We are barely 12 hours into this fundraiser!! Seriously people...you are AMAZING!
For those who are interested in donating to Sadie's Chariot Fund, I have created a link to make a donation via paypal! Simply hit the "donate" button below and it will safely and securely take you where you need to go.
Wednesday, January 30, 2013
Tuesday, January 29, 2013
A Chariot for our Princess
A great opportunity has been presented to us, and I have decided to right a post about it here to help explain and give a clear picture of our (Sadie's) need.
I know a bit ago I put blogged about all the "Angels" in our lives and all the blessings we have been on the receiving end of over the past year. Each of those who have helped us in some way, have truly been an answer to prayer for us. So, this is with a humbled heart that I am sharing this with you and asking you to consider helping us in this specific way.
We have been blessed beyond measure. Never have we ever been a family that has lived on one income. We did not think it possible. However, due to Sadie's extensive health issues, it was clearly in her best interest for me to become a full time stay at home mom for her. With lots of sacrifice and intentional saving and thrifting and blessings by others along the way, God has given us exactly what we need.
As some of you may know, in the next month or two, our Princess will be getting her new "wheels". That's right, Sadie will be getting a very fancy wheelchair.
This wheelchair comes with mixed emotions for Nick and I. It will certainly make Sadie more comfortable when we are "out and about" with her, giving her support in all the right places. The stroller she has been using, although a good one, certainly does not lend her support where she needs it to sit comfortably.
The wheelchair will also allow her to ride the bus for school. She will start going to school at the return from spring break. This also overwhelms me with a flood of emotions, that I try to not think about now....
The wheelchair is a necessity to give her the quality of life she deserves.
Her chair will weigh approximately 70 pounds. It does not "fold up". It will not lie down. You can take it apart, but only to a point. It also has to last her for approximately 6+ years, so taking it apart isn't advisable as it only adds wear and tear to it.
Currently Sadie still rides in a rear facing car seat, which is also not comfortable for her to ride in for long periods of time, nor is it easy on our backs getting her in and out of.
Because of this, we are faced with the new reality that we need to purchase a wheelchair accessible van to accommodate Sadie's new chair. In a van, that will allow Sadie to ride comfortably in her wheelchair and no longer rear facing in a car seat.
For those who have never looked, these are quite expensive. We'd say ridiculously expensive. To purchase an "older" one with many miles on it, will cost you nearly $15-25,000. There is alot to be considered when purchasing a van like this, as it has to be reliable (the last thing you want is to be stranded on the side of the road) and the lift put in is probably the most important part, as not all lifts can be serviced locally.
With this new mountain coming before us, we have been approached by a friend who has very kindly offered to head up a fundraiser for us, so we can purchase a good/used wheelchair accessible van. We certainly intend on selling our truck (very sad over this), but the reality is, this will be a very difficult purchase for us to do alone. so, we are looking to our friends. We are looking to those who know our Princess and who have loved her, who have prayed for her, who have been touched by her warrior perseverance, who have heard her story and know just how purposeful God had for her life, for those who don't know her, but who are willing to help....
The goal of this fundraiser is to reach 4,000 people who would be willing to donate $5.00 and complete it in the month of February. So, from February 1 - 28 we are praying that this will go "viral" and that people would be encouraged to skip that morning Starbucks, or perhaps a drive thru lunch, and help us purchase a new Chariot for Our Princess.
We know that Sadie is loved by MANY and her life has touched each of you and more. Praying that you will consider donating in this way, to help us give her the best...which is what she deserves!
An account called "SADIE'S CHARIOT FUND" has been set up at Chemical Bank. All donations can be dropped off to any Chemical Bank Branch, or mailed to;
Chemical Bank
5980 Lake Michigan Dr.
Allendale, MI 49401
Attn: Conni/Sadie's Chariot Fund
Check's will need to be written to Audrey Beute and/or Sarah Butterfield, and put "SADIE'S CHARIOT FUND" in the memo line of the check, or enclose a with a note so it is appropriately deposited into the correct account.
Blessings to all of you for all of your prayers and support of our Princess Sadie!
We also encourage you to send out a link to this blog so many will hear our story (her story) and be moved as well.
I know a bit ago I put blogged about all the "Angels" in our lives and all the blessings we have been on the receiving end of over the past year. Each of those who have helped us in some way, have truly been an answer to prayer for us. So, this is with a humbled heart that I am sharing this with you and asking you to consider helping us in this specific way.
We have been blessed beyond measure. Never have we ever been a family that has lived on one income. We did not think it possible. However, due to Sadie's extensive health issues, it was clearly in her best interest for me to become a full time stay at home mom for her. With lots of sacrifice and intentional saving and thrifting and blessings by others along the way, God has given us exactly what we need.
As some of you may know, in the next month or two, our Princess will be getting her new "wheels". That's right, Sadie will be getting a very fancy wheelchair.
This wheelchair comes with mixed emotions for Nick and I. It will certainly make Sadie more comfortable when we are "out and about" with her, giving her support in all the right places. The stroller she has been using, although a good one, certainly does not lend her support where she needs it to sit comfortably.
The wheelchair will also allow her to ride the bus for school. She will start going to school at the return from spring break. This also overwhelms me with a flood of emotions, that I try to not think about now....
The wheelchair is a necessity to give her the quality of life she deserves.
Her chair will weigh approximately 70 pounds. It does not "fold up". It will not lie down. You can take it apart, but only to a point. It also has to last her for approximately 6+ years, so taking it apart isn't advisable as it only adds wear and tear to it.
Currently Sadie still rides in a rear facing car seat, which is also not comfortable for her to ride in for long periods of time, nor is it easy on our backs getting her in and out of.
Because of this, we are faced with the new reality that we need to purchase a wheelchair accessible van to accommodate Sadie's new chair. In a van, that will allow Sadie to ride comfortably in her wheelchair and no longer rear facing in a car seat.
For those who have never looked, these are quite expensive. We'd say ridiculously expensive. To purchase an "older" one with many miles on it, will cost you nearly $15-25,000. There is alot to be considered when purchasing a van like this, as it has to be reliable (the last thing you want is to be stranded on the side of the road) and the lift put in is probably the most important part, as not all lifts can be serviced locally.
With this new mountain coming before us, we have been approached by a friend who has very kindly offered to head up a fundraiser for us, so we can purchase a good/used wheelchair accessible van. We certainly intend on selling our truck (very sad over this), but the reality is, this will be a very difficult purchase for us to do alone. so, we are looking to our friends. We are looking to those who know our Princess and who have loved her, who have prayed for her, who have been touched by her warrior perseverance, who have heard her story and know just how purposeful God had for her life, for those who don't know her, but who are willing to help....
The goal of this fundraiser is to reach 4,000 people who would be willing to donate $5.00 and complete it in the month of February. So, from February 1 - 28 we are praying that this will go "viral" and that people would be encouraged to skip that morning Starbucks, or perhaps a drive thru lunch, and help us purchase a new Chariot for Our Princess.
We know that Sadie is loved by MANY and her life has touched each of you and more. Praying that you will consider donating in this way, to help us give her the best...which is what she deserves!
An account called "SADIE'S CHARIOT FUND" has been set up at Chemical Bank. All donations can be dropped off to any Chemical Bank Branch, or mailed to;
Chemical Bank
5980 Lake Michigan Dr.
Allendale, MI 49401
Attn: Conni/Sadie's Chariot Fund
Check's will need to be written to Audrey Beute and/or Sarah Butterfield, and put "SADIE'S CHARIOT FUND" in the memo line of the check, or enclose a with a note so it is appropriately deposited into the correct account.
Blessings to all of you for all of your prayers and support of our Princess Sadie!
We also encourage you to send out a link to this blog so many will hear our story (her story) and be moved as well.
Sunday, January 27, 2013
Sanctity of Life
sanc·ti·ty
[sangk-ti-tee] Show IPA
tɪ
noun,
plural
sanc·ti·ties.
1. holiness, saintliness, or godliness.
2. sacred or hallowed character:
the inviolable sanctity of the temple.
3. a sacred thing.
noun
1. the condition that distinguishes
organisms from inorganic objects and dead organisms, being manifested by growth through metabolism, reproduction,
and the power of adaptation to environment through changes originating internally.
2. the sum of the distinguishing
phenomena of organisms, especially metabolism, growth, reproduction,
and adaptation to environment.
3. the animate existence or period of animate existence of an individual:
to risk one's life; a short life and a merry one.
4. a corresponding
state, existence, or principle of existence conceived of as belonging to the soul: eternal life.
When thinking recently of Sanctity of Life, I felt inspired to put this video together. These are just some of the families very near and dear to me who have been called by God to walk the Narrow Road of adoption. Not an easy journey by any means, but one full of blessings.
Speaking from my own experience, when we adopted our first child, after he came home, we almost immediately started our second adoption. When we brought our second son home (third child in our family) I was ready to dive right in again. It was my husband that said "You can't save them ALL!" I loved the front row seat I had to watching God work and change his heart.
Speaking from a friend who is now in the process of their 5th adoption (8th child in their family) when she first brought adoption up to her husband his response was "I'm not into that adoption thing." Seeing the deep faith and heart change of this godly man, who puts all trust and faith in God to provide for their family is amazing.
There is no "gray area" when reading God's direction in Isaiah for caring for the orphans. There is no way of interpreting that verse other than for what it is "to look after orphans and widows in their distress and to keep oneself from being polluted by the world." The only thing for you to question is in what way can you care for the orphans? We are all not called to adopt...but the truth is, we are ALL called.
Our stories are all very different. Our children's stories are also very different. But the one thing in common of all is that God's plan and purpose for each LIFE as well as our faith in God to walk us thru each one of our journeys to our children.
My prayer is that each day more of my friends and family see what difference they can make to ONE. That does not mean that they have to adopt, there are so many ways to be involved with supporting the orphans. If you ever want info on that, please let me know. But the blessings to know you have helped ONE....there are no words.
For those who have not seen this video, I thought I would share this as well. I made this for Sadie's adoption. A true testimony to how our adoption, our submission to following God's call for us, mattered to this ONE.
Blessings to you my friends!!!
Saturday, January 19, 2013
Stress of the Seizure
After the exhaustion and stress of being in the hospital for a week, I was very much looking forward to a weekend of "rest".
We made last minute plans to visit with friends Friday night. Well, "visit" was more going to evaluate their daughter's wheelchair as we ordered the same for Sadie and trying to figure out our future transportation dilemma. But, and out is and out and any excuse to see friends....I was excited.
Early in the evening I watched Sadie do this really weird "twitch" with her eyes. I have seen this once before as did Nick. I video taped it to message to the same friend that we were meeting with to get her opinion. Sadie does alot of things that sometimes we wonder if it is seizure activity...but it is just hard to tell.
Here is the video
We made last minute plans to visit with friends Friday night. Well, "visit" was more going to evaluate their daughter's wheelchair as we ordered the same for Sadie and trying to figure out our future transportation dilemma. But, and out is and out and any excuse to see friends....I was excited.
Early in the evening I watched Sadie do this really weird "twitch" with her eyes. I have seen this once before as did Nick. I video taped it to message to the same friend that we were meeting with to get her opinion. Sadie does alot of things that sometimes we wonder if it is seizure activity...but it is just hard to tell.
Here is the video
Later although her eyes were twitching slightly, she seemed a bit sleepy, so we layed her on her blanket and boppy pillow and went and ate dinner with the rest of the family.
After dinner we found her laying quietly, soaking wet from her own drool, in a total "Tonic Clonic" (these are what they now call Grand Mal) seizure.
My heart. My poor baby girl. I now know in reality that she started having her seizure hours prior. I know that it is not my fault for not knowing...but the guilty mom part has yet to forgive myself.
Thankfully we have a medication called Diastat in the house. This is basically a rectal Valium that is suppose to abort the seizure. You give one dose and if after 5 minutes it does not stop, you give a second dose. Thankfully, Sadie's stopped after the first. We were able to distract the other kiddos with things we needed them to do, to avoid the stress on them of Sadie going thru this. I think it is just as hard on Ryleigh as it is myself.
After seizures and that medication, she slept. I just snuggled and prayed the rest of the evening, while "watching" Ice Age with the rest of the family.
To try to give myself "peace of mind" I put Sadie in bed with me, so I would know if she started to seize again.
My biggest fears with seizures...what if she does not come back as "herself"? Worse, what if this is the one that takes her from us forever? You feel completely helpless when your child does this. I have never experienced a fear like this before.
What I really hate is the unknown of what caused this. Sadie's prior seizures generally have been able to be linked to something...and illness, vaccines, etc. This...nothing. No known cause. When will the next one come?
I have found that I loath nothing else in life more than these seizures. I feel completely paralyzed by them. I hate that Sadie has to go thru this. I hate it. I hate that we have no idea of knowing when or why. I hate that we just got over spending 7 days, 6 nights in the hospital and last night was the night.
I think I referred to myself as having self-diagnosed PTSD following seizures. This is on a high level again today.
Please pray for our Princess and that she may continue to thrive as she has....but someday do it seizure free!
Please pray for the rest of the family and that we can live not fearing these horrible seizures!
Thursday, January 17, 2013
What a CRAZY week!!
Well, for those who don't follow me on facebook this is what went down;
Sadie started a fever a week ago this past Sunday. I cannot express to you the level of LOATHING I have for fevers and Sadie. Sadie is very prone to Febrile Seizures. So, when she has a fever we go on "Seizure Watch". I can't take my eyes off her. During the day she will be in my arms or in my view at least...and at night, in our bed. Some may call it overkill or over reacting. However, if you ever had to witness your child in a Tonic Clonic (Grand Mal) Seizure, it is something you NEVER want to repeat again. We have seen three in Sadie. Horrifying...truly.
Monday she continued to fever all day and she slept majority. The fever was her only symptom. By afternoon I was certain she had a Urinary Tract Infection. Called the doctor and he sent us to the ER. We were there from 6:00 p.m. to 2:00 a.m. The nurse upon exam also was certain for a bladder infection. However, urine sample came out negative. They did a couple of blood tests and those also all came out normal. We are left asking one thing...is this a virus, or is this the symptom of shunt failure or a shunt infection. Unfortunately, shunt failures present very much like a virus. Some of the symptoms are fevers, lethargy, vomiting. So, you can see why we have to be concerned always in the back of our minds. We opted to go home and "observe"her for a few more days.
Tuesday, Sadie continued the fever all day and was only awake for maybe one non-consecutive hour of the day.
Wednesday, Sadie continue to fever. This time the fever was climbing past 102 and was not responding to ibuprofen or Tylenol. Called back to the doctor, who, sent us back to ER.
We arrived at about 4:30. Both days we were there, the ER was overfull. It was just crazy how busy they were! They had children on beds in the hallways! I am very thankful that they take Sadie's condition in to first priority. Both times we bi pass the waiting room so we don't have to wait. This is more to prevent her exposure to other virus' that could make her very ill.
They ran some different labs that did come back elevated, which indicated that there is an infection SOMEWHERE...but we can't pinpoint the cause. We go back to, she could have some virus...or it could be shunt failure. The decision was made to admit her and further investigate in the morning. It was 11:30 when they admitted her, but 2:00 a.m. before they had a room available for us.
Thursday was spent doing more labs and swab for Influenza. Our prayer was that a virus would be detected on the swab. However, it did not. She vomited (passed her Nissen) Thursday afternoon, so they stopped feeding her. She continued to sleep all day Thursday. Her Neurosurgeon ordered her to have a Nuclear Shunt Study done on Friday morning.
Friday morning they started feeding Sadie again, however, now on a 24 hour drip. Not how I wanted to be sent home...that is for sure. A Nuclear Shunt Study is when they inject a magnetic dye into the valve of her shut. This material will fill all her ventricles and then you can watch it be pumped out and released into her abdomen. This basically shows the path of what the shunt does for her Cerebral Fluid. It was very interesting to watch. We could see it all in her brain as well as where it released into her abdomen. According to the Tech, this all looked good.
At 3:00 on Friday we were consulting with the floor doctors and agreed that we could just be discharged and continue monitoring her from home and also working our way off the drip feed and back to our "normal" feeding schedule. We all felt that the Nuclear Study looked well and we could rest easier that it was not a shunt malfunction. Well, within seconds that all changed. The Neurosurgeon walks right thru the two floor doctors, stopping the conversation immediately. He talks to Nick and I and says that he feels it is necessary to put in an external drain. This will be the ONLY way to verify if the shunt is working properly. Once the external shunt is in place, we will be monitored in the Pediatric ICU for 2-4 days. If we go home and she does have a shunt infection/failure, the danger to her is severe. Of course, there is risks with putting in the external shunt such as brain bleed and exposing the brain to infection that could ultimately end in death. We were shocked and taken totally off guard. Trying to wrap my mind around everything, I ask if I am to call the office Monday morning to schedule this and he responded with "the OR room is reserved and the team is waiting". We literally had less than 3 minutes to make this decision. We asked for 5 minutes to "talk it over" (although there was really nothing to discuss). They gave us 3 minutes and we took that time to pray over her. In less than 15 minutes she was in surgery. The surgery lasted about 2 hours. 2 LONG hours. We were scared. Nick and I had the entire waiting room to ourselves and had little conversation. Although close to tears nearly the entire time, I continually had the verse "Be still and know that I am God". It gave me peace.
What the surgeon was able to find out during the surgery was that her ICP (Inter cranial Pressure) was within normal range. Had we not done this procedure, we would not be able to tell that. We spent the weekend in PICU monitoring that. At no point did we need to use the drain, as her shunt was handling things all on it's own.
The external pump was removed Monday and we were discharged on Tuesday. Basically, all we can assume is that Sadie had a random undetectable virus which caused the crazy blood counts as well as her sleepiness. We are thankful for that. We are also thankful and have complete peace of mind, that her existing shunt is working as it should.
Sadie has returned back to her normal self and we are so very thankful!! She is jumping right back into the swing of things and is back at school TODAY!!
We went back to Mary Free Bed yesterday for an evaluation and she will start more therapy there. That will mean going to Mary Free Bed every Monday and Wednesday and then school every Tuesday and Thursday. Busy busy times, but that is all good! She will keep this schedule until March 25 and then after spring break, she will be going to school!! WOW!! So, this schedule will be allot for her, but good "training" for going to school soon.
Thank you to everyone who carried us in prayer last week. It was an exhausting week, but felt God's presence throughout.
I am not a fan of Sadie's new "haircut". I fear this will take FOREVER to grow out....thinking I need to find more wide headbands with some big bows!!
And then, one of my favorite moments caught on camera...the sweetest smile....love her! So thankful she is well!!
Sadie started a fever a week ago this past Sunday. I cannot express to you the level of LOATHING I have for fevers and Sadie. Sadie is very prone to Febrile Seizures. So, when she has a fever we go on "Seizure Watch". I can't take my eyes off her. During the day she will be in my arms or in my view at least...and at night, in our bed. Some may call it overkill or over reacting. However, if you ever had to witness your child in a Tonic Clonic (Grand Mal) Seizure, it is something you NEVER want to repeat again. We have seen three in Sadie. Horrifying...truly.
Monday she continued to fever all day and she slept majority. The fever was her only symptom. By afternoon I was certain she had a Urinary Tract Infection. Called the doctor and he sent us to the ER. We were there from 6:00 p.m. to 2:00 a.m. The nurse upon exam also was certain for a bladder infection. However, urine sample came out negative. They did a couple of blood tests and those also all came out normal. We are left asking one thing...is this a virus, or is this the symptom of shunt failure or a shunt infection. Unfortunately, shunt failures present very much like a virus. Some of the symptoms are fevers, lethargy, vomiting. So, you can see why we have to be concerned always in the back of our minds. We opted to go home and "observe"her for a few more days.
Tuesday, Sadie continued the fever all day and was only awake for maybe one non-consecutive hour of the day.
Wednesday, Sadie continue to fever. This time the fever was climbing past 102 and was not responding to ibuprofen or Tylenol. Called back to the doctor, who, sent us back to ER.
We arrived at about 4:30. Both days we were there, the ER was overfull. It was just crazy how busy they were! They had children on beds in the hallways! I am very thankful that they take Sadie's condition in to first priority. Both times we bi pass the waiting room so we don't have to wait. This is more to prevent her exposure to other virus' that could make her very ill.
They ran some different labs that did come back elevated, which indicated that there is an infection SOMEWHERE...but we can't pinpoint the cause. We go back to, she could have some virus...or it could be shunt failure. The decision was made to admit her and further investigate in the morning. It was 11:30 when they admitted her, but 2:00 a.m. before they had a room available for us.
Thursday was spent doing more labs and swab for Influenza. Our prayer was that a virus would be detected on the swab. However, it did not. She vomited (passed her Nissen) Thursday afternoon, so they stopped feeding her. She continued to sleep all day Thursday. Her Neurosurgeon ordered her to have a Nuclear Shunt Study done on Friday morning.
Friday morning they started feeding Sadie again, however, now on a 24 hour drip. Not how I wanted to be sent home...that is for sure. A Nuclear Shunt Study is when they inject a magnetic dye into the valve of her shut. This material will fill all her ventricles and then you can watch it be pumped out and released into her abdomen. This basically shows the path of what the shunt does for her Cerebral Fluid. It was very interesting to watch. We could see it all in her brain as well as where it released into her abdomen. According to the Tech, this all looked good.
At 3:00 on Friday we were consulting with the floor doctors and agreed that we could just be discharged and continue monitoring her from home and also working our way off the drip feed and back to our "normal" feeding schedule. We all felt that the Nuclear Study looked well and we could rest easier that it was not a shunt malfunction. Well, within seconds that all changed. The Neurosurgeon walks right thru the two floor doctors, stopping the conversation immediately. He talks to Nick and I and says that he feels it is necessary to put in an external drain. This will be the ONLY way to verify if the shunt is working properly. Once the external shunt is in place, we will be monitored in the Pediatric ICU for 2-4 days. If we go home and she does have a shunt infection/failure, the danger to her is severe. Of course, there is risks with putting in the external shunt such as brain bleed and exposing the brain to infection that could ultimately end in death. We were shocked and taken totally off guard. Trying to wrap my mind around everything, I ask if I am to call the office Monday morning to schedule this and he responded with "the OR room is reserved and the team is waiting". We literally had less than 3 minutes to make this decision. We asked for 5 minutes to "talk it over" (although there was really nothing to discuss). They gave us 3 minutes and we took that time to pray over her. In less than 15 minutes she was in surgery. The surgery lasted about 2 hours. 2 LONG hours. We were scared. Nick and I had the entire waiting room to ourselves and had little conversation. Although close to tears nearly the entire time, I continually had the verse "Be still and know that I am God". It gave me peace.
What the surgeon was able to find out during the surgery was that her ICP (Inter cranial Pressure) was within normal range. Had we not done this procedure, we would not be able to tell that. We spent the weekend in PICU monitoring that. At no point did we need to use the drain, as her shunt was handling things all on it's own.
The external pump was removed Monday and we were discharged on Tuesday. Basically, all we can assume is that Sadie had a random undetectable virus which caused the crazy blood counts as well as her sleepiness. We are thankful for that. We are also thankful and have complete peace of mind, that her existing shunt is working as it should.
Sadie has returned back to her normal self and we are so very thankful!! She is jumping right back into the swing of things and is back at school TODAY!!
We went back to Mary Free Bed yesterday for an evaluation and she will start more therapy there. That will mean going to Mary Free Bed every Monday and Wednesday and then school every Tuesday and Thursday. Busy busy times, but that is all good! She will keep this schedule until March 25 and then after spring break, she will be going to school!! WOW!! So, this schedule will be allot for her, but good "training" for going to school soon.
Thank you to everyone who carried us in prayer last week. It was an exhausting week, but felt God's presence throughout.
I am not a fan of Sadie's new "haircut". I fear this will take FOREVER to grow out....thinking I need to find more wide headbands with some big bows!!
And then, one of my favorite moments caught on camera...the sweetest smile....love her! So thankful she is well!!
Sunday, January 6, 2013
Not always about Sadie
I am thankful that this blog is getting quite a following. It has been really neat to hear comments from people I never knew would be reading the blog as well as comments from people I don't know. I am hoping that this will serve as education and encouragement to others.
The question has been asked if it is just Sadie. I feel, outside of Sadie, our lives are very "normal" and much not worth mentioning. That is NOT TRUE, however with regards to my other kids!
So, I wanted to take a moment to intro them, since there are so many new readers.
Nick and I have been married for 14 1/2 years!! We met and started dating while in high school!
Our first born is Ryleigh. She is our only biological child (maybe more on that later...). What an super amazing young lady she is. At 11 (almost 12 years old) I can confidently call her just that...a young lady. Ryleigh has always been older than her years. She did everything early! Started walking at 9 months old, was speaking full sentences by her first birthday. You could carry on the most amazing conversations with her! She has always been full of compassion and cared deeply for everyone. Today she is an amazing daughter, a thoughtful sister, a loyal friend and I could not be more proud of her. She was babysitting for us Saturday night so Nick and I could have a "date". We don't get out often nor do we stay away long or too late. Nothing warmed our hearts more than when we came home and Ryleigh was helping Nathan with his devotions before bed. In the 6th grade she has pulled off all A's in her first semester (studying COMPLETELY independently) and has played softball and basketball for the middle school team. Don't get me wrong, she is far from perfect...but, I assure you that they don't get much closer than she. What a blessing she is to us!!!
Kobe...our first exposure to adoption!! When Ryleigh was very young we decided to adopt to grow our family. Our first adoption could NOT have gone better or smoother. God placed Kobe right in our laps. Many of you don't know, but there were many "unknowns" that came with this guy, as he was born at 32 weeks and he had many developmental concerns. We didn't blink an eye. We saw his huge head of crazy hair and knew instantly that he was ours. His adoption took 9 months from the beginning of filling out papers for our homestudy until he came home (3 days after his first birthday). Kobe was a challenge at times. He was and still to this day very intense. But, this boy loves deeply and hard. He strives to make things right when he sees things are not fair. I should correct that...of course he notices when things are unfair, but he is more concerned when he feels people are not being treated fairly! At 10 years old he is frustrated he does not get some privileges that his almost 12 year old sister has, and equally frustrated that he does not get away with things his 8 year old brother does. Poor middle child. Kobe is passionate about sports, but has chosen to pretty much focus solely on football. He was exposed this past year and we found an untapped talent in him. He was awesome....and he had such an amazing humble attitude about it...I think that is just what made it so great! Although he challenges me daily with his constant questions and quite frankly is ability to challenge authority, I know it comes from a good place. I can always count on him to still snuggle with me or hand me a hug. I cherish that as I know it will not last much longer.
Then there is Nathan. I believe Kobe was home for less than 4 months when we started the process of our second adoption. We wanted to start right away because of Kobe being over a year old and the "normal" time frame could take 1 1/2 - 2 years. Imagine our surprise again that Nathans adoption was 10 months from the start of paperwork for homestudy until he was home. Again, smooth process...not even the slightest hiccup! Nathan was 9 months old when he came home...but we always said he looked like an 80 year old mad. He was so cute with a nearly bald head and what appeared to be a come over. However at 9 months old he was walking everywhere!! I have never ever met a happier boy that Nathan. ALWAYS a smile on his face. Always. He had such an imagination when he was little. His two friends Jon Jon and Little Steve were having HUGE (imaginary....like them) adventures and SO detailed. I regret this very day not writing more of their adventures together. When Nathan came home we found a diary in his bag from his birth mom. What a treasure. It is all in Korean and I was quick to have it translated. This is a book that makes me weep each time I read it. At the end of each entry, she in some way wished him happiness or a happy life or that he always be happy. My mom quite often commented how she feels his birth mom's wishes for his happiness IS the reason he was always so happy. I believe it to be true. At 8 1/2 today he is all boy. He thinks he is tops at every sport....I will admit he is good. He loves his "buddies" and plays hard. He is a jokester, but also the first one to ask to pray each night at dinner. He is just full of passion for life in general.
We are blessed!!
Update on Sadie, this week we are going back to Mary Free Bed for a PT Eval and an Oral Therapy Eval. I am hoping she will get approved for more PT there. She does go to "school" two afternoons a week for 1 1/2 hours where she gets her PT, OT and Speech. But, if we have a chance for more...I want it for her! I think Mary Free Bed is more intense and really works her hard! The Oral Therapy is to see if she is ready to start therapy to see if she might ever eat orally again. I am on the fence with this. Oral Therapy can be very intense and is a VERY LONG process. It is funny because her feeding tube does seem to be the source of most people's questions. We get alot "Will she ever be able to eat normally." I will be honest, I cringe at that question. First...there is NOTHING normal about Sadie, so why it is so important for her to eat...I don't get really. But, this G-Tube has given us PEACE that she is getting 100% of her meds, which keep her healthy. The G-Tube allows us to know that she is getting all her hydration...even when she's sick and we can keep her fed all the time. Even if she goes thru feeding therapy her eating will probably never be "normal" anyway. However, this was always in our "plan" and I feel like we need to give it a shot. These evaluations can be exhausting for Sadie (and this mom), so if you want to send up some extra prayers, we go in on Wednesday.
I have really enjoyed the past two weeks off with the kids, however, today has proven that it is time to go back. I am very much looking forward to getting back on a (gasp) schedule!!
The question has been asked if it is just Sadie. I feel, outside of Sadie, our lives are very "normal" and much not worth mentioning. That is NOT TRUE, however with regards to my other kids!
So, I wanted to take a moment to intro them, since there are so many new readers.
Nick and I have been married for 14 1/2 years!! We met and started dating while in high school!
Our first born is Ryleigh. She is our only biological child (maybe more on that later...). What an super amazing young lady she is. At 11 (almost 12 years old) I can confidently call her just that...a young lady. Ryleigh has always been older than her years. She did everything early! Started walking at 9 months old, was speaking full sentences by her first birthday. You could carry on the most amazing conversations with her! She has always been full of compassion and cared deeply for everyone. Today she is an amazing daughter, a thoughtful sister, a loyal friend and I could not be more proud of her. She was babysitting for us Saturday night so Nick and I could have a "date". We don't get out often nor do we stay away long or too late. Nothing warmed our hearts more than when we came home and Ryleigh was helping Nathan with his devotions before bed. In the 6th grade she has pulled off all A's in her first semester (studying COMPLETELY independently) and has played softball and basketball for the middle school team. Don't get me wrong, she is far from perfect...but, I assure you that they don't get much closer than she. What a blessing she is to us!!!
Kobe...our first exposure to adoption!! When Ryleigh was very young we decided to adopt to grow our family. Our first adoption could NOT have gone better or smoother. God placed Kobe right in our laps. Many of you don't know, but there were many "unknowns" that came with this guy, as he was born at 32 weeks and he had many developmental concerns. We didn't blink an eye. We saw his huge head of crazy hair and knew instantly that he was ours. His adoption took 9 months from the beginning of filling out papers for our homestudy until he came home (3 days after his first birthday). Kobe was a challenge at times. He was and still to this day very intense. But, this boy loves deeply and hard. He strives to make things right when he sees things are not fair. I should correct that...of course he notices when things are unfair, but he is more concerned when he feels people are not being treated fairly! At 10 years old he is frustrated he does not get some privileges that his almost 12 year old sister has, and equally frustrated that he does not get away with things his 8 year old brother does. Poor middle child. Kobe is passionate about sports, but has chosen to pretty much focus solely on football. He was exposed this past year and we found an untapped talent in him. He was awesome....and he had such an amazing humble attitude about it...I think that is just what made it so great! Although he challenges me daily with his constant questions and quite frankly is ability to challenge authority, I know it comes from a good place. I can always count on him to still snuggle with me or hand me a hug. I cherish that as I know it will not last much longer.
Then there is Nathan. I believe Kobe was home for less than 4 months when we started the process of our second adoption. We wanted to start right away because of Kobe being over a year old and the "normal" time frame could take 1 1/2 - 2 years. Imagine our surprise again that Nathans adoption was 10 months from the start of paperwork for homestudy until he was home. Again, smooth process...not even the slightest hiccup! Nathan was 9 months old when he came home...but we always said he looked like an 80 year old mad. He was so cute with a nearly bald head and what appeared to be a come over. However at 9 months old he was walking everywhere!! I have never ever met a happier boy that Nathan. ALWAYS a smile on his face. Always. He had such an imagination when he was little. His two friends Jon Jon and Little Steve were having HUGE (imaginary....like them) adventures and SO detailed. I regret this very day not writing more of their adventures together. When Nathan came home we found a diary in his bag from his birth mom. What a treasure. It is all in Korean and I was quick to have it translated. This is a book that makes me weep each time I read it. At the end of each entry, she in some way wished him happiness or a happy life or that he always be happy. My mom quite often commented how she feels his birth mom's wishes for his happiness IS the reason he was always so happy. I believe it to be true. At 8 1/2 today he is all boy. He thinks he is tops at every sport....I will admit he is good. He loves his "buddies" and plays hard. He is a jokester, but also the first one to ask to pray each night at dinner. He is just full of passion for life in general. We are blessed!!
Update on Sadie, this week we are going back to Mary Free Bed for a PT Eval and an Oral Therapy Eval. I am hoping she will get approved for more PT there. She does go to "school" two afternoons a week for 1 1/2 hours where she gets her PT, OT and Speech. But, if we have a chance for more...I want it for her! I think Mary Free Bed is more intense and really works her hard! The Oral Therapy is to see if she is ready to start therapy to see if she might ever eat orally again. I am on the fence with this. Oral Therapy can be very intense and is a VERY LONG process. It is funny because her feeding tube does seem to be the source of most people's questions. We get alot "Will she ever be able to eat normally." I will be honest, I cringe at that question. First...there is NOTHING normal about Sadie, so why it is so important for her to eat...I don't get really. But, this G-Tube has given us PEACE that she is getting 100% of her meds, which keep her healthy. The G-Tube allows us to know that she is getting all her hydration...even when she's sick and we can keep her fed all the time. Even if she goes thru feeding therapy her eating will probably never be "normal" anyway. However, this was always in our "plan" and I feel like we need to give it a shot. These evaluations can be exhausting for Sadie (and this mom), so if you want to send up some extra prayers, we go in on Wednesday.I have really enjoyed the past two weeks off with the kids, however, today has proven that it is time to go back. I am very much looking forward to getting back on a (gasp) schedule!!
Thursday, January 3, 2013
I don't believe in coincidences...just sayin'
We have been experiencing the most amazing connections in just some of the craziest ways lately. We don't believe in coincidences...these meetings (or nearly reunions) are just blowing my mind.
So, I had already blogged previously about the crazy meeting I had with (unexpectingly for me) coming face to face with Dr. Yaa, (Link to Blog here). Well, since then, there have been a few other "reunions"!!
Shortly after we had accepted our referral of Sadie (in May 2011) our adoption case worker traveled to Ghana. It was at that time she met and started advocating for finding the forever family of a sweet baby girl, Afua.
Afua....Such a beautiful baby girl! She had the most beautiful eyes. I remember passing on her information to a very special friend of mine and then the praying began. We felt such a strong connection to this special angel, Afua. It was not in God's plan for my friend to adopt Afua, however, we did not stop praying for her. We celebrated when we had heard a family came forward to adopt her, we mourned when we found that that placement did not come to be. We prayed some more for sweet sweet Afua.
Fast forward to December 2012... 1 1/2 years later...I am on a Ghana Adopt facebook group and I know many of you are aware of my "facebook stalking" tendancies. I was being drawn to "stalk" this really neat mom of a very sweet special needs girl, that really had alot of similiarities to Sadie. Not being one to stay quiet for long, I ended up messaging this mom and "outing" my weird stalking behavior, only to find that she has also be stalking me! We started "chatting" thru several e-mails and I just could not help but wonder in the back of my mind and finally had to ask...."Your baby...was her name Afua??" Oddly, as I waited for her response, I was literally tense. What are the chances!? This world is really so big! I am sure that this child could not possibly be the baby my friend and I have prayed over. There are 436 members in the Ghana group...and I am certain hundreds, if not thousands of families that have adopted from Ghana before. What are the chances. When her answer came back as "Yes!" I nearly fell off my chair. Again, just as with Dr. Yaa and God knitting that reunion together for nearly 2 1/2 years...He did it again. It is odd, but I have grown quickly to cherish this mother and knowing that I had been praying for her daugther over a year and a half ago, just makes me know that God was intentional in uniting me with this new friend. I am in awe that she and her husband not just chose to adopt, but brave a special needs adoption FIRST as a way of starting their family. I am excited to see the blessings that comes from my new friendship.
Shortly after Sadie was home, my niece called me. She is a Pediatric Echocardio-somethin or other...She works at a children's hospital in southern Ohio and performs echocardiograms on children. She was very excited explaining how a mom was in with her two recently adopted children that had some significant special needs. After sharing her story with my niece, she started telling this mom about our Princess. As it ended up...she (the mom) already knew her! Not only knew her, but also prayed for her!! When I heard this story, I was amazed. Our little tiny Ghanaian Princess....how she touched so so many lives. Fast forward again to just earlier this very week....I am advocating for placement of some pretty special kiddos and posted some info on Danny. This very nice lady inquired if she could pass his information on. I agreed and thanked her for helping spread the word on this boy. She later friend requested me on facebook. I was intrigued by a picture she posted earlier TODAY and something about one of her children struck me as very familiar to the conversation I had with my niece over a year ago. So, I had to ask if she may have been that lady. I don't know why I was surprised when she said YES! Of course it was her! At this point I should just assume.
I have been having some pretty awesome people popping up in my life recently with advocating for these kids in Ghana. It may seem weird, but I feel blessed by each meeting! These families are all so inspiring and I am left in awe and amazement of each one!
These "reunions" are true blessings!! I think it just shows us all how huge and SIGNIFICANT the lives of these little special needs kiddos are! These are our life changers that can bring people together from many different states, even countries, just by sharing the love we have for each of them.
So, I had already blogged previously about the crazy meeting I had with (unexpectingly for me) coming face to face with Dr. Yaa, (Link to Blog here). Well, since then, there have been a few other "reunions"!!
Shortly after we had accepted our referral of Sadie (in May 2011) our adoption case worker traveled to Ghana. It was at that time she met and started advocating for finding the forever family of a sweet baby girl, Afua.
Afua....Such a beautiful baby girl! She had the most beautiful eyes. I remember passing on her information to a very special friend of mine and then the praying began. We felt such a strong connection to this special angel, Afua. It was not in God's plan for my friend to adopt Afua, however, we did not stop praying for her. We celebrated when we had heard a family came forward to adopt her, we mourned when we found that that placement did not come to be. We prayed some more for sweet sweet Afua.
Fast forward to December 2012... 1 1/2 years later...I am on a Ghana Adopt facebook group and I know many of you are aware of my "facebook stalking" tendancies. I was being drawn to "stalk" this really neat mom of a very sweet special needs girl, that really had alot of similiarities to Sadie. Not being one to stay quiet for long, I ended up messaging this mom and "outing" my weird stalking behavior, only to find that she has also be stalking me! We started "chatting" thru several e-mails and I just could not help but wonder in the back of my mind and finally had to ask...."Your baby...was her name Afua??" Oddly, as I waited for her response, I was literally tense. What are the chances!? This world is really so big! I am sure that this child could not possibly be the baby my friend and I have prayed over. There are 436 members in the Ghana group...and I am certain hundreds, if not thousands of families that have adopted from Ghana before. What are the chances. When her answer came back as "Yes!" I nearly fell off my chair. Again, just as with Dr. Yaa and God knitting that reunion together for nearly 2 1/2 years...He did it again. It is odd, but I have grown quickly to cherish this mother and knowing that I had been praying for her daugther over a year and a half ago, just makes me know that God was intentional in uniting me with this new friend. I am in awe that she and her husband not just chose to adopt, but brave a special needs adoption FIRST as a way of starting their family. I am excited to see the blessings that comes from my new friendship.
Shortly after Sadie was home, my niece called me. She is a Pediatric Echocardio-somethin or other...She works at a children's hospital in southern Ohio and performs echocardiograms on children. She was very excited explaining how a mom was in with her two recently adopted children that had some significant special needs. After sharing her story with my niece, she started telling this mom about our Princess. As it ended up...she (the mom) already knew her! Not only knew her, but also prayed for her!! When I heard this story, I was amazed. Our little tiny Ghanaian Princess....how she touched so so many lives. Fast forward again to just earlier this very week....I am advocating for placement of some pretty special kiddos and posted some info on Danny. This very nice lady inquired if she could pass his information on. I agreed and thanked her for helping spread the word on this boy. She later friend requested me on facebook. I was intrigued by a picture she posted earlier TODAY and something about one of her children struck me as very familiar to the conversation I had with my niece over a year ago. So, I had to ask if she may have been that lady. I don't know why I was surprised when she said YES! Of course it was her! At this point I should just assume.
I have been having some pretty awesome people popping up in my life recently with advocating for these kids in Ghana. It may seem weird, but I feel blessed by each meeting! These families are all so inspiring and I am left in awe and amazement of each one!
These "reunions" are true blessings!! I think it just shows us all how huge and SIGNIFICANT the lives of these little special needs kiddos are! These are our life changers that can bring people together from many different states, even countries, just by sharing the love we have for each of them.
Wednesday, January 2, 2013
Mama Bear
This might sting a bit. I am generally never at a loss for words, yet I have been struggling to articulate this experience and these emotions in to words....I am going to preface this post saying that it is not intended to finger point or call anyone out. It is me, being honest.
I am a SENSITIVE person. Not news to anyone. Although I don't often show my emotions (I am dutch and therefore cannot show tears or weakness) over the past year I have become more "in tune" with my emotions...and at times, may not have controlled them as well as I should have.
I am a REACTOR. I am trying hard to not be such a quick responder, but rather process and think of more appropriate responses.
I am a FIERCE protector of ALL my children (thus the title of Mama Bear)
I think given these three facts about me, is why I have a hard time with people that don't treat Sadie like....maybe like I expect them too? I almost find myself saying that I get frustrated that people don't treat Sadie like a "normal" child...but I know that isn't right.
So, I obviously know that Sadie is not "normal". And I also know that, sadly, many people are just not comfortable around those with special needs. I quite often leave many places feeling frustrated/sad at the lack of acknowledgement/attention given to Sadie. The reality of Sadie is that she cannot invest time in you...you have to invest time in her. And let me be the one to tell you...she knows. She knows when people are comfortable and when they are not. She knows the difference between someone who has spent time with her before and a stranger. She also remembers.
So, I have been trying to step back and really figure out what is bugging me about this. I think it is the FIERCE PROTECTOR in me, that I want ALL my children to be loved on and treated EQUALLY. It is the REACTOR in me that wants to jump all over why someone wouldn't want to be involved with Sadie. And it's the SENSITIVE part of me that just wants everyone to experience the amazing Blessing of giving their love to Sadie.
Reality is; Sadie will never be "normal" and each and every day I am more and more thankful for that. Sadie; our fighter, our miracle, our teacher, our life changer....she is happy just by being loved. We should ALL be that simple! Just being happy being loved.
So, instead of reading into and trying to figure out why on earth someone wouldn't want to hold Sadie, talk to her, or just be invested in her...I am going to pray for that person. For it isn't Sadie that is missing out on the attention...as she gets PLENTY. It is really the people that are scared of something new/different that are really missing out on something big...something special...Sadie.
My prayer is also that if anyone reads this and feels that this is geared towards them, to know, it really isn't. I have not thought of one specific person that this applies too, only that it is something that regularly occurs.
I am a SENSITIVE person. Not news to anyone. Although I don't often show my emotions (I am dutch and therefore cannot show tears or weakness) over the past year I have become more "in tune" with my emotions...and at times, may not have controlled them as well as I should have.
I am a REACTOR. I am trying hard to not be such a quick responder, but rather process and think of more appropriate responses.
I am a FIERCE protector of ALL my children (thus the title of Mama Bear)
I think given these three facts about me, is why I have a hard time with people that don't treat Sadie like....maybe like I expect them too? I almost find myself saying that I get frustrated that people don't treat Sadie like a "normal" child...but I know that isn't right.
So, I obviously know that Sadie is not "normal". And I also know that, sadly, many people are just not comfortable around those with special needs. I quite often leave many places feeling frustrated/sad at the lack of acknowledgement/attention given to Sadie. The reality of Sadie is that she cannot invest time in you...you have to invest time in her. And let me be the one to tell you...she knows. She knows when people are comfortable and when they are not. She knows the difference between someone who has spent time with her before and a stranger. She also remembers.
So, I have been trying to step back and really figure out what is bugging me about this. I think it is the FIERCE PROTECTOR in me, that I want ALL my children to be loved on and treated EQUALLY. It is the REACTOR in me that wants to jump all over why someone wouldn't want to be involved with Sadie. And it's the SENSITIVE part of me that just wants everyone to experience the amazing Blessing of giving their love to Sadie.
Reality is; Sadie will never be "normal" and each and every day I am more and more thankful for that. Sadie; our fighter, our miracle, our teacher, our life changer....she is happy just by being loved. We should ALL be that simple! Just being happy being loved.
So, instead of reading into and trying to figure out why on earth someone wouldn't want to hold Sadie, talk to her, or just be invested in her...I am going to pray for that person. For it isn't Sadie that is missing out on the attention...as she gets PLENTY. It is really the people that are scared of something new/different that are really missing out on something big...something special...Sadie.
My prayer is also that if anyone reads this and feels that this is geared towards them, to know, it really isn't. I have not thought of one specific person that this applies too, only that it is something that regularly occurs.
Subscribe to:
Posts (Atom)