Today was a crazy day!!!
It started this morning when Mak got up an hour early and read every clock in the house wrong and stood at the bus stop for 15 minutes before coming home and realizing that he got up so early! Then my mom came up to spend the day and I headed out with Conner to pick up Mak and the three of us had dentist appointments. On the way there, the van kinda went into neutral without actually switching gears and then went right back into drive - kinda strange, but I was just planning on telling Derrick about it later. Then after our appointment we got in the van and I couldn't get it into gear. I put it in reverse but it wouldn't go - I gave it some gas and it eventually shifted into gear but after I backed out of the parking spot and put it in drive, it wouldn't go again - it seemed to be stuck in neutral - I coasted back into our parking spot. I tried to restart the van and over and over again I tried to get it to back out but it never seemed to stay in gear. Since I was not about to get out on the roads with a car that wouldn't stay in gear, I called a friend to give us a ride home. We were almost there when I got a call from Derrick telling me that Jordan had pulled her feeding tube out and I needed to get home right away!!!
My mom was feeding Jordan and she pulled on the tube and it popped right out! It was only a few days ago that Lynn Fagerman mentioned to me that she was nearing a good time for a routine tube change - about every 3 months. My mom had her sitting on her changing table when I got home and since it had only been out for about 5 minutes, I grabbed a new one and amazingly put it right in and inflated the balloon with no problems. Jordan was fine and she now has a new tube that should last for a few more months.
I wasn't sure I could do it before, but now that I have seen it and done it, I guess I can! It's amazing what experiencing something can teach you. I was so scared, but when I pushed it in the hole and it went it, I had a HUGE sense of relief! I now have a new sense of confidence with Jordan and her tube.
However, I think my mom now has more fears and insecurities about Jordan. She was the one that was here and experienced it falling out and was not sure what to do. I hope that this experience doesn't make her uneasy about caring for Jordan - she was pretty shaken up about all of it. Please be praying for my mom to feel okay about everything - she needs to know that this is not something that happens every day and she didn't do anything wrong to cause it to happen. Please pray for to have a peace about it and a willingness to care for her again.
Thursday, February 5, 2009
Neurodevelopmental/Feeding Appt.
On Tuesday of this week, 2/3, Jordan had an appointment with Lynn Fagerman at the Gerber Center. They started by weighing and measuring her - she was 19 lbs 1 oz - a loss of 4 oz since a week ago. I was concerned because she hasn't missed any feedings and yet is losing weight. Lynn said that she isn't getting enough calories and is replacing one of her bottles of Pediasure with Boost Kids Essentials 1.5 which is supposed to have double the calories of Pediasure. We will start that as soon as it is delivered by Airway Oxygen.
Lynn was very concerned that Jordan has had no progress in her speech and is still only making the "b" sound. She was surprised that Early On has not pursued that avenue sooner, but encouraged me to work with them soon. I discussed this with my therapist on Wednesday and we are scheduled for an evaluation with a speech pathologist on 2/23.
She is glad that Jordan is going to be going back to see the geneticist in June and hopes that maybe some additional information can be gathered at that appointment.
She agreed that Jordan's hands are kinda strange and encouraged me to schedule an appointment with the hand specialist but did not think that she would need a referral. If one is needed, it would need to come from her pediatrician since she is in the feeding program.
She also recommended that while Jordan is being seen through their feeding program, she would be a good candidate for their neurodevelopmental program. She would be evaluated every 6 months by a team of people - occupational therapist, physical therapist, speech therapist, dietitian, psychologist, etc. I am hoping to get a referral from my pediatrician on Friday.
I love meeting with Lynn because I feel like I have a full overall evaluation of Jordan with all of my questions being answered. I was with her for an hour and we talked about all sorts of things relating to her feeding and development. I am concerned about her weight loss but encouraged by the things was are changing to hopefully increase her weight.
Lynn was very concerned that Jordan has had no progress in her speech and is still only making the "b" sound. She was surprised that Early On has not pursued that avenue sooner, but encouraged me to work with them soon. I discussed this with my therapist on Wednesday and we are scheduled for an evaluation with a speech pathologist on 2/23.
She is glad that Jordan is going to be going back to see the geneticist in June and hopes that maybe some additional information can be gathered at that appointment.
She agreed that Jordan's hands are kinda strange and encouraged me to schedule an appointment with the hand specialist but did not think that she would need a referral. If one is needed, it would need to come from her pediatrician since she is in the feeding program.
She also recommended that while Jordan is being seen through their feeding program, she would be a good candidate for their neurodevelopmental program. She would be evaluated every 6 months by a team of people - occupational therapist, physical therapist, speech therapist, dietitian, psychologist, etc. I am hoping to get a referral from my pediatrician on Friday.
I love meeting with Lynn because I feel like I have a full overall evaluation of Jordan with all of my questions being answered. I was with her for an hour and we talked about all sorts of things relating to her feeding and development. I am concerned about her weight loss but encouraged by the things was are changing to hopefully increase her weight.
Oral Therapy
Last Tuesday, 1/27, Jordan went in for her first oral therapy appointment at Mary Free Bed. We met with Ellen and nurse Jane and we chatted for a few minutes about her progress over the past 5 months. They weighed and measured her - 19 lbs 5 oz and 29.5 inches - a gain of 12 oz since 1/3, but still below the 3rd%.
We discussed her swallow study and she said the biggest concern was the silent aspiration - food going into her lungs without her coughing at all. She was very surprised by the results and was concerned that she has been rattly and coughing since then. Ellen insisted that she perform the next swallow study because she may have approached it differently because of her knowledge and experiences with Jordan. She recommend we perform another one in 5-6 months.
Ellen showed me several oral techniques to use to stimulate her mouth and to soften the tissue in her cheeks and lips. She gave me several sheets that described and showed pictures of the them to remind myself later. Because I have worked with Ellen before, she felt comfortable asking me to do these at home 3 times a day and discharging me from therapy. She didn't want me to use up my insurance visits if we can get Jordan eating in another 6 months or so.
Since then I have attempted at least 2-3 times a day to work with Jordan but she refuses to allow me to stick my hands anywhere near her mouth or face. If I convince her to let me get my finger in her mouth, she turns her head away or tries to bite me (successfully several times)!! The external massages I am only able to do for a brief time if she has a pacifier in her mouth.
I am getting frustrated because I feel like I am unable to do anything to progress her forward toward eating again. I am hopeful that if I continue to work with her without pushing too hard, eventually she will let me work with her. Otherwise, we may end up having to return to Mary Free Bed for therapy before long.
We discussed her swallow study and she said the biggest concern was the silent aspiration - food going into her lungs without her coughing at all. She was very surprised by the results and was concerned that she has been rattly and coughing since then. Ellen insisted that she perform the next swallow study because she may have approached it differently because of her knowledge and experiences with Jordan. She recommend we perform another one in 5-6 months.
Ellen showed me several oral techniques to use to stimulate her mouth and to soften the tissue in her cheeks and lips. She gave me several sheets that described and showed pictures of the them to remind myself later. Because I have worked with Ellen before, she felt comfortable asking me to do these at home 3 times a day and discharging me from therapy. She didn't want me to use up my insurance visits if we can get Jordan eating in another 6 months or so.
Since then I have attempted at least 2-3 times a day to work with Jordan but she refuses to allow me to stick my hands anywhere near her mouth or face. If I convince her to let me get my finger in her mouth, she turns her head away or tries to bite me (successfully several times)!! The external massages I am only able to do for a brief time if she has a pacifier in her mouth.
I am getting frustrated because I feel like I am unable to do anything to progress her forward toward eating again. I am hopeful that if I continue to work with her without pushing too hard, eventually she will let me work with her. Otherwise, we may end up having to return to Mary Free Bed for therapy before long.
Thursday, January 15, 2009
No Food Yet!!
This morning I took Jordan in to Mary Free Bed for a videofluroscopy (video swallow study) and Oral Motor Evaluation. I met Rose and we talked briefly about Jordan's history and her current oral experiences. Since she doesn't eat anything by mouth her only exposure is through toys, pacifiers, and anything she picks up off the ground and puts in her mouth!! I explained that they had recommended that we allow her to pleasure feed for 2-3 bites for 3 meals a day of honey/pudding thick Pediasure but she cried when we took the food away so I stopped doing that after only a few days for fear of creating a food aversion.
We then went and began the videofluroscopy. We started with a couple of bites of honey/pudding thick Pediasure. the first few bites went okay but on her 4th bite she aspirated quite a bit. We moved on to pudding thick chocolate pudding (which is actually thicker than pudding normally comes) and after a few bites of doing okay, she again aspirated. The radiologist cut off the swallow study at that point and we went into a room to discuss it.
Rose explained that she does not feel that Jordan is ready for oral foods. She has a tendency to let food slip down her throat rather than gather it at the back of her tongue and swallow. She does swallow okay (not good, just okay) but sometimes there is some slight nasal aspiration (it goes up into her nasal passages) and it often doesn't go down completely in one swallow. The most difficult problem we are facing at this time is the fact that the food is not going completely into her stomach. It goes most of the way down and then kinda creaps up. This is not considered reflux because it never makes it to her stomach.
The concerns at this point are that she doesn't seem to be affected by food sitting at the back of her throat, aspirating food without coughing or any attempt to clear it from her lungs, and food not going completely to her stomach when she swallows. The first 2 are controlled by voluntarily means - she needs to learn to hold the food in her mouth before swallowing and to cough if it gets into her esophogus. However, once you swallow food, it is involuntary muscles that control it's passage into your stomach. Rose is concerned that Jordan has some neurological problems causing her to not know to move that food the rest of the way down to her stomach. These difficulties may never be resolved through therapy. Rose felt confident that Jordan would eat at some point but feels that it might be a while.
She recommended that we pursue a "boot camp" of speech and oral motor therapy that does not include feeding to try to make her more aware of and develop her oral skills. She is recommending 8 weeks of therapy 2 times a week. After that we will have several months of continuing that therapy at home and they will re-evaluate her at that time with another swallow study.
I hadn't really prepared myself for this result. I kinda expected to go in and see that she still has some difficulty swallowing and move into therapy to work on teaching her to swallow properly. I am working on processing it all and coming to an understanding of how severe Jordan's situation is. I am once again relying on God to provide me the strength to keep pressing on. I love this little girl with all my heart and I know that she is soooo strong. She makes me stronger every day by the things she teaches me. I am amazed at how much I still have to learn!
We then went and began the videofluroscopy. We started with a couple of bites of honey/pudding thick Pediasure. the first few bites went okay but on her 4th bite she aspirated quite a bit. We moved on to pudding thick chocolate pudding (which is actually thicker than pudding normally comes) and after a few bites of doing okay, she again aspirated. The radiologist cut off the swallow study at that point and we went into a room to discuss it.
Rose explained that she does not feel that Jordan is ready for oral foods. She has a tendency to let food slip down her throat rather than gather it at the back of her tongue and swallow. She does swallow okay (not good, just okay) but sometimes there is some slight nasal aspiration (it goes up into her nasal passages) and it often doesn't go down completely in one swallow. The most difficult problem we are facing at this time is the fact that the food is not going completely into her stomach. It goes most of the way down and then kinda creaps up. This is not considered reflux because it never makes it to her stomach.
The concerns at this point are that she doesn't seem to be affected by food sitting at the back of her throat, aspirating food without coughing or any attempt to clear it from her lungs, and food not going completely to her stomach when she swallows. The first 2 are controlled by voluntarily means - she needs to learn to hold the food in her mouth before swallowing and to cough if it gets into her esophogus. However, once you swallow food, it is involuntary muscles that control it's passage into your stomach. Rose is concerned that Jordan has some neurological problems causing her to not know to move that food the rest of the way down to her stomach. These difficulties may never be resolved through therapy. Rose felt confident that Jordan would eat at some point but feels that it might be a while.
She recommended that we pursue a "boot camp" of speech and oral motor therapy that does not include feeding to try to make her more aware of and develop her oral skills. She is recommending 8 weeks of therapy 2 times a week. After that we will have several months of continuing that therapy at home and they will re-evaluate her at that time with another swallow study.
I hadn't really prepared myself for this result. I kinda expected to go in and see that she still has some difficulty swallowing and move into therapy to work on teaching her to swallow properly. I am working on processing it all and coming to an understanding of how severe Jordan's situation is. I am once again relying on God to provide me the strength to keep pressing on. I love this little girl with all my heart and I know that she is soooo strong. She makes me stronger every day by the things she teaches me. I am amazed at how much I still have to learn!
Monday, January 12, 2009
It's Been a While...
It's been quite a while since I've posted anything here. I guess no news is good news. But in reality, it has been the craziness of our lives that has kept me from keeping everyone up to date on Jordan.
Jordan has been doing great and we love to see her adorable personality shine through in everything she does. Temper tantrums are occasionally entering into our world when Conner takes something away from her or plays with something that she wants to play with. The best sound in the world is the laughter that Conner can create in that little girl just by climbing in the portacrib with her!!
We have had the normal ear infections, colds and flu run through our house over the past couple months and so far, everyone except me has been sick at one point or another (thank you Airborne!!!) It was interesting to experience what happens when Jordan has the stomach flu with her feeding tube. I was able to experience what "wretching and gagging" was like and how to relieve the stomach when she is unable to throw up (due the the Nissen Fundoplication.)
The most exciting event happened on December 2nd. After lunch, I was cleaning up the kitchen and I saw Jordan was under the kitchen table with something in her mouth. I went to go see what it was, figuring Conner dropped some of his lunch and she was giving it a try. To my surprise, I found a nail in her mouth!!! I tried to get it out but the angle was bad so I laid her on her back and attempted to sweep her mouth to remove it. To my complete amazement, it completely disappeared!!! I looked in her mouth and it was gone!! I moved her and it wasn't on the floor under her!! I couldn't believe that my daughter that can't swallow, just swallowed a nail!!! The crazy part was that she acted completely normal...as though nothing had just happened!!!
Needless to say, after talking to the Dr. and getting a babysitter to our house for Conner, I headed to the ER. After checking her out and taking a few x-rays, they found the nail. It had passed through her Nissen without incident and was through her stomach at the beginning of her small intestine. They sent us home and we waited for it to pass. A few days later a follow-up x-ray showed that the nail was gone! Jordan had swallowed a nail and it passed without incident!! We were thrilled, but it has made us a little more cautious about what she might find around the house to put in her mouth. What we find most often is that she puts EVERYTHING in her mouth but NEVER swallows anything (unless mom forces it down her throat by sweeping her mouth!!! - I'm a little more careful about that now!)
Other than that, we had a wonderful Christmas! Jordan started walking while pushing a toy in early December and so we bought her a stroller walker with a doll and she loves to push it around the house!! She also learned to roll over from her back to her stomach! This is a milestone that has made feeding her on the floor more difficult. We normally have her strapped in her highchair now so she doesn't have any escape options! More and more we see the business of Conner in that little girl!
In just a few days, Jordan will be going back to Mary Free Bed for an oral motor evaluation and videofluroscopy. I am soooo excited to see if she is able to swallow. We will hopefully be starting oral feeding soon and getting her back into feeding therapy. Please pray that this evaluation goes well and that we are able to begin therapy with the same therapist that treated her last summer.
The biggest concern at this point is a lack of weight gain. Jordan was doing great for several months following her surgery and was up to 18 lbs 9 oz as of her appt on 10/30. I took her in last week and her weight was again 18lbs 9 oz. That's 2 months with no weight gain. In November, we transitioned her from 6-125 ml feedings to 5-150 ml feedings so we were no longer feeding her while she slept. However, 2 bouts with the flu and an ear infection have caused her to sleep much more and there were many days I was only able to fit 4 feedings in. I am feeling somewhat guilty for these missed feedings now that I see how significantly they affected her weight gain. Please pray that I am able to work 5 feedings in every day and that she begins to gain weight again.
Jordan has been doing great and we love to see her adorable personality shine through in everything she does. Temper tantrums are occasionally entering into our world when Conner takes something away from her or plays with something that she wants to play with. The best sound in the world is the laughter that Conner can create in that little girl just by climbing in the portacrib with her!!
We have had the normal ear infections, colds and flu run through our house over the past couple months and so far, everyone except me has been sick at one point or another (thank you Airborne!!!) It was interesting to experience what happens when Jordan has the stomach flu with her feeding tube. I was able to experience what "wretching and gagging" was like and how to relieve the stomach when she is unable to throw up (due the the Nissen Fundoplication.)
The most exciting event happened on December 2nd. After lunch, I was cleaning up the kitchen and I saw Jordan was under the kitchen table with something in her mouth. I went to go see what it was, figuring Conner dropped some of his lunch and she was giving it a try. To my surprise, I found a nail in her mouth!!! I tried to get it out but the angle was bad so I laid her on her back and attempted to sweep her mouth to remove it. To my complete amazement, it completely disappeared!!! I looked in her mouth and it was gone!! I moved her and it wasn't on the floor under her!! I couldn't believe that my daughter that can't swallow, just swallowed a nail!!! The crazy part was that she acted completely normal...as though nothing had just happened!!!
Needless to say, after talking to the Dr. and getting a babysitter to our house for Conner, I headed to the ER. After checking her out and taking a few x-rays, they found the nail. It had passed through her Nissen without incident and was through her stomach at the beginning of her small intestine. They sent us home and we waited for it to pass. A few days later a follow-up x-ray showed that the nail was gone! Jordan had swallowed a nail and it passed without incident!! We were thrilled, but it has made us a little more cautious about what she might find around the house to put in her mouth. What we find most often is that she puts EVERYTHING in her mouth but NEVER swallows anything (unless mom forces it down her throat by sweeping her mouth!!! - I'm a little more careful about that now!)
Other than that, we had a wonderful Christmas! Jordan started walking while pushing a toy in early December and so we bought her a stroller walker with a doll and she loves to push it around the house!! She also learned to roll over from her back to her stomach! This is a milestone that has made feeding her on the floor more difficult. We normally have her strapped in her highchair now so she doesn't have any escape options! More and more we see the business of Conner in that little girl!
In just a few days, Jordan will be going back to Mary Free Bed for an oral motor evaluation and videofluroscopy. I am soooo excited to see if she is able to swallow. We will hopefully be starting oral feeding soon and getting her back into feeding therapy. Please pray that this evaluation goes well and that we are able to begin therapy with the same therapist that treated her last summer.
The biggest concern at this point is a lack of weight gain. Jordan was doing great for several months following her surgery and was up to 18 lbs 9 oz as of her appt on 10/30. I took her in last week and her weight was again 18lbs 9 oz. That's 2 months with no weight gain. In November, we transitioned her from 6-125 ml feedings to 5-150 ml feedings so we were no longer feeding her while she slept. However, 2 bouts with the flu and an ear infection have caused her to sleep much more and there were many days I was only able to fit 4 feedings in. I am feeling somewhat guilty for these missed feedings now that I see how significantly they affected her weight gain. Please pray that I am able to work 5 feedings in every day and that she begins to gain weight again.
Thursday, November 13, 2008
Friday's Adventures (almost a week late)
Well, last Friday I decided that Jordan's cough had gone on long enough and she sounded soooo rattley - we were used to that sound from the time she was 2 weeks old until several weeks after she had her feeding tube put in and no longer ate orally. However, it was not something that I wanted to let go after a week of coughing and a low fever that jumped on Friday. So we took her in to the doc and she had an ear infection and an upper respiratory infection. He started her on Amoxicillin and we gave her first dose at her 5:30pm feeding.
Since it was Friday, it was pizza night!! After situating Jordan in her new Jumperoo - the best new toy for a busy little girl, we sat down on the couches and floor to watch some tv and enjoy our pizza. Jordan jumped like crazy for about 1/2 hr and then started fussing a little. I reached down between the front of the jumper and her belly to grab her pacifier to stick it back in and realized that the front of her was drenched!! I took her out and upstairs to change her clothes and put some dry gauze on. When we came back down, I decided not to put her back in the jumper since it seemed to cause her tube to leak. The kids and I played on the floor for about an hour until it was time to get ready for bed. I picked her up and realized that she was soaked again! I carried her upstairs and laid her down to take off the wet clothes and realized that she was now leaking bloody stomach contents - GROSS!!! I took off her clothes and gauze and looked at the tube site and there was a huge bubble of tissue coming out of it! I talked with Derrick and a few friends and decided that we needed to take a trip to the ER.
We headed in and our nurse, Jon was great!! He had fun interacting with Jordan while talking to me about what happened and checking out her belly. Since I had cleaned her up before coming in, there wasn't much to see other than the tissue growth. I put her in a gown and we waited to see the doc. Since Jordan isn't one for sitting still much anymore, she was all over the place!! Since I didn't want her crawling on the floor, I pulled up the side of the bed and let her crawl around on it. After about 15 minutes, I realized that she was leaking all over the place again and Jon came in and looked at it. We cleaned her up and gave her a clean gown and some gauze to try to soak up any leaking. The doc came in and looked her over. He decided to consult with her surgeon before deciding on what to do. He came back in and Dr. Neil had said to put 2ml more into the balloon and to use silver nitrate on the tissue to cauterize it. After a few minutes, we were ready to head home. Although, the entire trip took us almost 3 hours (there was lots of time sitting in the room waiting and Jordan wasn't so patient!!)
We followed up with Dr. Neil on Tuesday and he thought everything looked good now. He said that he had granulation tissue can't grow that fast so it was most likely Jordan's stomach that had prolapsed out of the tube site. He said he has never seen it, but it was theoretically possible and since the tissue was a dark purple instead of fleshy pink, it was probably her stomach.
I guess this journey we are on with Jordan is full of twists and turns! I feel like there is something new I learn every week! As for now, she is doing well and healing. He said for us to give the jumper a break for a few weeks but there's no reason she can't use it in the future. He recommended a tight onesie or ace bandage to secure the tube from rubbing too much.
Since it was Friday, it was pizza night!! After situating Jordan in her new Jumperoo - the best new toy for a busy little girl, we sat down on the couches and floor to watch some tv and enjoy our pizza. Jordan jumped like crazy for about 1/2 hr and then started fussing a little. I reached down between the front of the jumper and her belly to grab her pacifier to stick it back in and realized that the front of her was drenched!! I took her out and upstairs to change her clothes and put some dry gauze on. When we came back down, I decided not to put her back in the jumper since it seemed to cause her tube to leak. The kids and I played on the floor for about an hour until it was time to get ready for bed. I picked her up and realized that she was soaked again! I carried her upstairs and laid her down to take off the wet clothes and realized that she was now leaking bloody stomach contents - GROSS!!! I took off her clothes and gauze and looked at the tube site and there was a huge bubble of tissue coming out of it! I talked with Derrick and a few friends and decided that we needed to take a trip to the ER.
We headed in and our nurse, Jon was great!! He had fun interacting with Jordan while talking to me about what happened and checking out her belly. Since I had cleaned her up before coming in, there wasn't much to see other than the tissue growth. I put her in a gown and we waited to see the doc. Since Jordan isn't one for sitting still much anymore, she was all over the place!! Since I didn't want her crawling on the floor, I pulled up the side of the bed and let her crawl around on it. After about 15 minutes, I realized that she was leaking all over the place again and Jon came in and looked at it. We cleaned her up and gave her a clean gown and some gauze to try to soak up any leaking. The doc came in and looked her over. He decided to consult with her surgeon before deciding on what to do. He came back in and Dr. Neil had said to put 2ml more into the balloon and to use silver nitrate on the tissue to cauterize it. After a few minutes, we were ready to head home. Although, the entire trip took us almost 3 hours (there was lots of time sitting in the room waiting and Jordan wasn't so patient!!)
We followed up with Dr. Neil on Tuesday and he thought everything looked good now. He said that he had granulation tissue can't grow that fast so it was most likely Jordan's stomach that had prolapsed out of the tube site. He said he has never seen it, but it was theoretically possible and since the tissue was a dark purple instead of fleshy pink, it was probably her stomach.
I guess this journey we are on with Jordan is full of twists and turns! I feel like there is something new I learn every week! As for now, she is doing well and healing. He said for us to give the jumper a break for a few weeks but there's no reason she can't use it in the future. He recommended a tight onesie or ace bandage to secure the tube from rubbing too much.
Sunday, November 9, 2008
"Welcome to Holland" and my thoughts...
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?!" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special lovely things ... about Holland.
c1987 by Emily Perl Kingsley. All rights reserved.
This is something I came across a few weeks ago when trying to learn more about Jordan's diagnosis of mild cerebral palsy. At first, it brought tears to my eyes because I can sometimes feel the "loss of that dream." But at the same time, I know that God has given me Jordan and I know that because of her "differences" and the adjustment of being in "Holland" is something that has forced me to trust in Him even more. Although Jordan's disabilities are minor and she will hopefully, if God's will, overcome many of the obstacles in her life, I still struggle with adjusting my dreams for her.
Derrick and I still talk of her being in the Olympics for gymnastics someday because she is so petite and flexible - but the reality is that she is extremely hypotonic (low tone) and may never have the ability to even participate in a sport that requires so much strength. I have read articles that explain that she will likely have difficulty with balance and coordination - she may never enjoy the sport of soccer that was my life for so many years! I may never get to cheer her on in the sport that I LOVE!!
I find that the dreams I had before Jordan was born, and even until her diagnosis, are still in my heart, but I have to adjust them with my head. But when I think about it, these are MY dreams. They are not the dreams of my daughter. Or Conner. Or Mak. Who am I to decide what my child should become? Who am I do decide what sports or activities they should pursue?
All I know is that God has blessed me with three beautiful children - all unique and special in their own way. He has called me to "train a child in the way he should go" (Proverbs 22:6a) and "bring them up in the training and instruction of the Lord (Ephesians 6:4b). No where does the Bible tell me to make them into what I want them to be. Therefore, although I have landed in "Holland" with Jordan, the adjustment to this new place has brought a new perspective to raising all 3 of my children.
Although I know I fail everyday in parenting, I have God's grace to fall back on. When I lose my patience with Conner, I need to remember that God is patient with me. When I get angry at Mak, I need to remember how God exhibits self-control. When I feel sad at the difficulties Jordan faces, I need to remember that God is joyful. When I think I know what to do in a situation, I need to turn to His Word, pray, and follow his will. These children are His and I am simply on this earth to guide them in His way. I pray that I will view my parenting responsibility in this light, rather than projecting MY thoughts, ideas, goals, and dreams on them. God has made them who they are for a reason and I need to teach them to live out His will in their lives.
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?!" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special lovely things ... about Holland.
c1987 by Emily Perl Kingsley. All rights reserved.
This is something I came across a few weeks ago when trying to learn more about Jordan's diagnosis of mild cerebral palsy. At first, it brought tears to my eyes because I can sometimes feel the "loss of that dream." But at the same time, I know that God has given me Jordan and I know that because of her "differences" and the adjustment of being in "Holland" is something that has forced me to trust in Him even more. Although Jordan's disabilities are minor and she will hopefully, if God's will, overcome many of the obstacles in her life, I still struggle with adjusting my dreams for her.
Derrick and I still talk of her being in the Olympics for gymnastics someday because she is so petite and flexible - but the reality is that she is extremely hypotonic (low tone) and may never have the ability to even participate in a sport that requires so much strength. I have read articles that explain that she will likely have difficulty with balance and coordination - she may never enjoy the sport of soccer that was my life for so many years! I may never get to cheer her on in the sport that I LOVE!!
I find that the dreams I had before Jordan was born, and even until her diagnosis, are still in my heart, but I have to adjust them with my head. But when I think about it, these are MY dreams. They are not the dreams of my daughter. Or Conner. Or Mak. Who am I to decide what my child should become? Who am I do decide what sports or activities they should pursue?
All I know is that God has blessed me with three beautiful children - all unique and special in their own way. He has called me to "train a child in the way he should go" (Proverbs 22:6a) and "bring them up in the training and instruction of the Lord (Ephesians 6:4b). No where does the Bible tell me to make them into what I want them to be. Therefore, although I have landed in "Holland" with Jordan, the adjustment to this new place has brought a new perspective to raising all 3 of my children.
Although I know I fail everyday in parenting, I have God's grace to fall back on. When I lose my patience with Conner, I need to remember that God is patient with me. When I get angry at Mak, I need to remember how God exhibits self-control. When I feel sad at the difficulties Jordan faces, I need to remember that God is joyful. When I think I know what to do in a situation, I need to turn to His Word, pray, and follow his will. These children are His and I am simply on this earth to guide them in His way. I pray that I will view my parenting responsibility in this light, rather than projecting MY thoughts, ideas, goals, and dreams on them. God has made them who they are for a reason and I need to teach them to live out His will in their lives.
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