Recap: The last time I wrote was in June when Norah met Dr. Paley for the 1st time. Since that appointment, she has achieved all of the things he said she would. She's standing, cruising, crawling and taking steps just like any other kid. He instructed us to wait for a cruiser and then begin the shoe lift process.
I am happy to say the reason I haven't written is because there hasn't been much to say. Alot of parents and families encouraged us to just enjoy her before all the treatments and hoopla began and that's exactly what we've done. Knowing we can't do a whole lot at this point, it really wasn't necessary to focus on it, nor was it worth the stress. I heard a country song recently and in the lyrics he said, "It might be off my chest, but it's sure not off my mind." Or something like that. Anyway, that stuck with me.
Rich and I both have begun to notice her discrepancy increasing. We were warned of this. She is nearing the point of where her tip-toeing won't be possible because her foot will just hang in the air. I've noticed she actually already does this when her toes are tired. It also puts quite a bit of pressure on the hip to limp around and tip toe. So after a wonderful few months of "forgetting" about it, we've recently decided it was time for her shoe lift. It's obvious it is holding her back from walking now and obviously we want her to be able to walk so that's the plan.
We thought it was time months ago and had her fitted for her brace only to realize there isn't a single shoe company (atleast to my knowledge) that makes hard-soled shoes smaller then a Size 4....atleast the kind that we need for her. Let me tell you, shopping for shoes for her was BRUTAL. Everywhere I went they looked at me like I had two heads when I said I needed a sneaker in a Size 2 or 3. "She's not ready for a sneaker, here's our non-walkers"......DUH. I must have heard that in EVERY shoe store I went to. But a non-walker soft-soled shoe cannot support a shoe lift, nor hold an ankle brace. "You could buy both?" Negative lady. She doesn't know what these things cost so I wasn't going to rant and rave to her. "One pair", I told her. "She gets one pair." Thus, the need for a sturdy, traditional sneaker that would last until the next shoe lift. So it was basically pointless, soft-soled sneakers that fit her, or giant Size 4 sneakers that were too big for her. I found a pair of dark brown boys shoes at one point that I was pretty close to buying and a pair of Spiderman kicks, but it just made me sad so back on the shelf they went. If this girl wasn't going to wear flipflops and maryjanes like the rest of em', she was going to have really pretty sneakers. I eventually gave up and told my husband, "We're waiting for her feet to grow because I can't deal with this anymore!"
And then I cried. Alot.
So we waited.
Over the last week, we've discussed the shoe lift alot and the best way to go about it. During that time, I've found myself feeling a little like I used to feel. Just short and irritable. We've had such an easy time recently and quite honestly I pushed it so far out of my mind that I just forgot what it felt like to worry about it. By this time next year, Norah will be in a Spica cast recovering from her 1st hip surgery and will have had her lift and brace on almost a year. I seriously can't wrap my head around that. I'm waiting to be pinched. She will be just 2 years old. But I have to keep telling myself, it's a gift. Her doctor, the surgery, all of it....without it, she won't walk.
With that said, there are so many different parts to this situation that I find difficult. However, the one I find myself struggling with the most recently is how I am supposed to feel about it. There are 2 routes you can go.
1: "I'm mad, sad and all of the above because this isn't normal. Kids shouldn't have to go through this. She rocks and is such a good kid and doesn't deserve it. She's just a baby, my baby." And insert sobbing here.
or 2: "This is nothing. Stop complaining because she's alive and healthy and will walk. Some kids never have the chance, some people are on their deathbeds, so shut up."
See how stressful that can be? It's as if I can't seem to find a balance between acknowledging it and allowing grief, yet also showing gratitude and appreciation for how wonderful our life is. I'm honestly not sure what is acceptable or appropriate.
So I'll be honest. I NEED TO CRY. Some people don't. But I do. I can hold myself together for a pretty long time. I'm pretty proud of that actually. But I have to admit, buying shoes for this little girl....I had to fight the tears. It all is becoming so real.
But I will be the first to tell you, and I constantly tell my husband, how blessed we are. The fact that we have a physically disabled daughter that is perfectly healthy and a Mom who stays home with her is enough. It's more than enough. My husband is home for dinner, walks in with a smile and is healthy. I am healthy. We love each other. Alot. We love our daughter, we love our families and they love us. We have people fighting to babysit her, to be around her and love her. We have wonderful neighbors and live in an amazing community. We have an undeniable amount of support around us.
So you see? How can I complain about her condition when I have all of that? You tell me.
If you are not already aware, we have created a fundraiser for The Paley Foundation. You can visit www.fishingforthekids.com for more information. This will be a really exciting event and you can bet on Rich as he fishes for the Bassmaster Classic win!
Friday, October 11, 2013
Sunday, June 16, 2013
Paley 1st Appointment Part 2: THE PLAN
First off, this one is long.....so have a seat.
We arrived in West Palm eager and ready for our appointment with Dr.Paley. When we arrived in the morning, Rich joked that we were like rockstars walking in as everyone shouted, "Norah! Norah!" like they already knew her and immediately came over to us with warm welcomes and hugs. He had been communicating with them since the week we brought her home so there was already a friendship there which made things a little easier. I on the other hand went in a bit nervous, a little queasy and no surprise....a bit protective of my baby. I had managed to hold it together pretty darn well until I caught a glimpse of the first of many patients we would see that day and lost my cool. Interestingly enough, he didn't have fixators on his legs like Norah would. He had them on both arms. Shortly after, we met a woman from Florida with them on her lower legs, then a little boy from Kansas who had just undergone the Super Ankle Surgery (quickly became great pals with my girl) and a young girl from Poland with one on her right leg. Needless to say, I felt like I was diving right in....there was no sitting on the edge of the steps and easing into the water nonsense. It was all in the minute we walked through that door.
We were surprised to see there was no helicopter pad or red carpet and Dr.Paley didn't come through a big wave of fog or anything.....just a normal doctor's office. :) Rich and I both had psyched ourselves up as many other parents seem to do as well and then you arrive and it's like, "okay, no big deal, just another hospital." I know at some point another family will read this and believe me, that statement will bring you comfort. When you just go in, fill out the usual paperwork, do your x-rays and wait for the Big Man, it feels normal. Like there's nothing special or scary about it. And trust me, while you're there, the more normal it feels, the easier it will be for you to not throw up your breakfast in the nearest trash can.
Norah and I played with little J.T. from Kansas while waiting. She had a BLAST with this kid. They were literally playing Tug-O-War over her piano, so cute!
After several hours of x-rays, playtime and waiting, we were pleased to see him by 2 o'clock. Like everyone has told us the last 9 months. "Worth the wait." He came in and gave us a warm welcome, shook our hands and got right down to business. Now I'm going to get scientific....
Her official diagnosis is Congenital Femoral Deficiency (C.F.D.) Type 1A and Fibular Hemimelia. Type1A is the best case you can have so that's great news. Her left femur (upper thigh bone) is shorter than her right as well as her lower Fibula and Tibia (lower leg bones) are shorter also. Her leg length discrepancy is anticipated to be 17.8cm or 7-8 inches at full skeletal maturity. This doesn't include the foot so maybe a tad more. When she begins to stand we can get a more accurate number. This means that if we do nothing her left leg would be 7-8 inches shorter than her right, prohibiting her from putting both feet on the ground.
Her treatment plan works in two phases. Preparation Phase and Lengthening Phase. Preparation would mean any surgery on any joints prior to leg lengthening to ensure all are strong and stabile. Lengthening would be the actual leg lengthening process which would most likely be accomplished in 2 lengthenings. (2 is awesome news) We were really hoping to avoid a Hip Surgery mainly because that occurs at age 2 and just the thought of a 2 year old under anesthesia makes me sick to my stomach, however that most likely won't be avoided. The good news about that though is he didn't see any glaring evidence that she will need the Super Hip Surgery which is more complex. She would be doing the Pelvic Osteotomy. This surgery from a patient standpoint is pretty much the same but from a technical/surgical standpoint, it is less involved. So thumbs up on no SuperHip and thumbs down on Pelvic Osteotomy. Her knee looked good, although she was born without an ACL or PCL. This is a minor detail in this case though. Her ankle is rotated so it is quite possible we would need an Ankle surgery as well. We didn't dive into details on that because it so far down the road.
At age 3, we would begin lengthening. For girls, half of the length discrepancy appears in the first 3 years. So this means by age 3, her left leg would already be roughly 3-4 inches shorter than her right. Then, from 3 to say 10 to 13 year old age the last 3-4 inches would be visible at a much slower pace. So after the 1st lengthening she would most likely gain 3 inches from that and it would appear as though her legs were almost the same length. Then over the next 7 years, the remaining 3-4 inch discrepancy would be visible and we would do our final lengthening at age 10. Lengthening takes 8 months. So after her prep surgeries and 1st lengthening she would have some "time off" until about age 10 where we would complete her last surgery/lengthening. What does that mean?
OUR LITTLE GIRL WILL HAVE BOTH FEET ON THE GROUND!
She will run, play, dance and do all the things other kids do. Even while undergoing this process,she will be able to swim and play in her fixators. In fact, you see alot of CFD patients swimming alot because it keeps the pins clean. Below are some photos "Before and After" and other kids coping with CFD.
http://paleyinstitute.org/?q=intro-to-limb-lengthening (This link explains the lengthening process very clearly if you have questions as to how they actually lengthen her leg)
We return in December to get more accurate x-rays of the hip. It can still continue to ossify until then, so there is a small chance the hip may be in good shape by then. He will examine her standing up as well and further confirm our plan.
We arrived in West Palm eager and ready for our appointment with Dr.Paley. When we arrived in the morning, Rich joked that we were like rockstars walking in as everyone shouted, "Norah! Norah!" like they already knew her and immediately came over to us with warm welcomes and hugs. He had been communicating with them since the week we brought her home so there was already a friendship there which made things a little easier. I on the other hand went in a bit nervous, a little queasy and no surprise....a bit protective of my baby. I had managed to hold it together pretty darn well until I caught a glimpse of the first of many patients we would see that day and lost my cool. Interestingly enough, he didn't have fixators on his legs like Norah would. He had them on both arms. Shortly after, we met a woman from Florida with them on her lower legs, then a little boy from Kansas who had just undergone the Super Ankle Surgery (quickly became great pals with my girl) and a young girl from Poland with one on her right leg. Needless to say, I felt like I was diving right in....there was no sitting on the edge of the steps and easing into the water nonsense. It was all in the minute we walked through that door.
We were surprised to see there was no helicopter pad or red carpet and Dr.Paley didn't come through a big wave of fog or anything.....just a normal doctor's office. :) Rich and I both had psyched ourselves up as many other parents seem to do as well and then you arrive and it's like, "okay, no big deal, just another hospital." I know at some point another family will read this and believe me, that statement will bring you comfort. When you just go in, fill out the usual paperwork, do your x-rays and wait for the Big Man, it feels normal. Like there's nothing special or scary about it. And trust me, while you're there, the more normal it feels, the easier it will be for you to not throw up your breakfast in the nearest trash can.
Norah and I played with little J.T. from Kansas while waiting. She had a BLAST with this kid. They were literally playing Tug-O-War over her piano, so cute!
 |
| Norah and fellow Paley patient "J.T." playing in the waiting room. |
After several hours of x-rays, playtime and waiting, we were pleased to see him by 2 o'clock. Like everyone has told us the last 9 months. "Worth the wait." He came in and gave us a warm welcome, shook our hands and got right down to business. Now I'm going to get scientific....
Her official diagnosis is Congenital Femoral Deficiency (C.F.D.) Type 1A and Fibular Hemimelia. Type1A is the best case you can have so that's great news. Her left femur (upper thigh bone) is shorter than her right as well as her lower Fibula and Tibia (lower leg bones) are shorter also. Her leg length discrepancy is anticipated to be 17.8cm or 7-8 inches at full skeletal maturity. This doesn't include the foot so maybe a tad more. When she begins to stand we can get a more accurate number. This means that if we do nothing her left leg would be 7-8 inches shorter than her right, prohibiting her from putting both feet on the ground.
Her treatment plan works in two phases. Preparation Phase and Lengthening Phase. Preparation would mean any surgery on any joints prior to leg lengthening to ensure all are strong and stabile. Lengthening would be the actual leg lengthening process which would most likely be accomplished in 2 lengthenings. (2 is awesome news) We were really hoping to avoid a Hip Surgery mainly because that occurs at age 2 and just the thought of a 2 year old under anesthesia makes me sick to my stomach, however that most likely won't be avoided. The good news about that though is he didn't see any glaring evidence that she will need the Super Hip Surgery which is more complex. She would be doing the Pelvic Osteotomy. This surgery from a patient standpoint is pretty much the same but from a technical/surgical standpoint, it is less involved. So thumbs up on no SuperHip and thumbs down on Pelvic Osteotomy. Her knee looked good, although she was born without an ACL or PCL. This is a minor detail in this case though. Her ankle is rotated so it is quite possible we would need an Ankle surgery as well. We didn't dive into details on that because it so far down the road.
At age 3, we would begin lengthening. For girls, half of the length discrepancy appears in the first 3 years. So this means by age 3, her left leg would already be roughly 3-4 inches shorter than her right. Then, from 3 to say 10 to 13 year old age the last 3-4 inches would be visible at a much slower pace. So after the 1st lengthening she would most likely gain 3 inches from that and it would appear as though her legs were almost the same length. Then over the next 7 years, the remaining 3-4 inch discrepancy would be visible and we would do our final lengthening at age 10. Lengthening takes 8 months. So after her prep surgeries and 1st lengthening she would have some "time off" until about age 10 where we would complete her last surgery/lengthening. What does that mean?
OUR LITTLE GIRL WILL HAVE BOTH FEET ON THE GROUND!
She will run, play, dance and do all the things other kids do. Even while undergoing this process,she will be able to swim and play in her fixators. In fact, you see alot of CFD patients swimming alot because it keeps the pins clean. Below are some photos "Before and After" and other kids coping with CFD.
| Before | After |
 |  |
http://paleyinstitute.org/?q=intro-to-limb-lengthening (This link explains the lengthening process very clearly if you have questions as to how they actually lengthen her leg)
With that said, it became pretty clear to us on the way home that this process was the right decision for her. Amputation is just crazy talk and a Prosthetic Leg was a consideration of ours for a while she but unnecessary. If she was going to spend her entire childhood in a surgical room, maybe we would consider that. I know there are other extreme cases where those options are the best route but in Norah's case, it just doesn't make sense for us. If we can give her the ability to walk with her own two legs ,that is the best thing we can do. Most of this will happen at such a young age that she wont even remember it. Sure she will remember her fixators at age 5 or 6 because she will be wearing them well into her teen years, but she wont remember the surgery itself.
For now, the treatment plan is a shoe lift and ankle brace until we begin the process. When Norah begins to stand on her own and begins cruising furniture then we will have special shoes designed to help her walk. The brace will help keep her ankle from twisting and rolling due to the platform. They will look a little bit like this:
 |
| This is Rory. Following her story has helped us SO much. You can read more about her at roryjane.com |
Jennifer, the Patient Coodinator took these pictures during our visit. She was super friendly!
All in all, we were pretty relieved when we left. To have a plan, answers and meet the man who will perform her surgeries was comforting. Rich reminded me of something on the way home. "God doesn't make mistakes", he said. He reminded me of that and that he has entrusted her with us and chosen us to be her parents. He knew we could handle this and that we would do something amazing with it. Who knows what the mission is or what she will do,but I believe it will be something remarkable, simply amazing. The less I focus on "this happening to her" and the more I focus on the blessing and how this will forever change her in the most humbling and beautiful way, the better Mom I am to her. I don't want to be angry about it. It is so exhausting being so angry and so wonderful when I just appreciate how beautiful she is.
My husband and I will be launching an INCREDIBLE fundraiser for The Paley Foundation very soon. As some of you know, he accomplished his greatest fishing achievement so far: Qualifying for the BASSMASTER CLASSIC 2014. This was a huge game changer for our family. You can support this cause by betting on my husband! You can donate an amount of your choice per pound of fish caught at The Bassmaster Classic 2014 or donate directly to the foundation once we post it. We will be posting website details and information soon and the fundraiser will be alot of fun! STAY TUNED!
As always, thank you all so much for your continued support through this. It means alot to us.
Friday, June 14, 2013
Meeting Dr.Paley for the 1st time
1st Paley Appointment June 14, 2013
Last night was a little emotional. For the most part we kept ourselves busy with preparations and I could feel myself finding things to do. I must have put the ziplocks in and out of the pantry 5 times while talking with my sister in law. :) As long as my hands were busy, I wasn't letting my mind wander. I have to say, we are both doing pretty well. I thought I would be a mess but I had just one weak moment last night. I'm feeling very hopeful and keeping my faith and Rich seems to be doing okay also. I think we're both accepting it really "is what it is" and there is no changing it so we might as well start moving forward and work toward staying positive. Beating myself up isn't going to help her although that is much easier said than done. But we're getting there. On a lighter note, after laying Norah down for bed....a long, teary good night, Rich and I did some more reading on Dr.Paley. After laughing hysterically at my resume compared to his, here's what we came up with:
Dr. Paley has developed over 100 surgical procedures and performed over 11,000 surgeries. I have successfully stopped the bleeding of Norah's 1st cut on her finger and it was in a really tough spot and cured many butt rashes. (alright so her cut was healed the next day...whatever)
He speaks 6 or 7 languages , some crazy number I'm not sure. FLUENTLY.
I speak English and Baby Talk. Booyah.
His hobbies include scuba diving, rock climbing, nature photography and fitness. I bet he doesn't record "The Voice" religiously like I do and consider a trip to Target a hobby....
He has written an 800 page text book on the science of limb deformity correction that is an orthopedic best seller. I don't think that can compete with my famous "Butt Cream" song do you? Stay tuned for the release of my new single.
He is the most experienced limb lengthening and deformity correction surgeon in the world. (not an opinion, it's a fact) He's treated patients from all 50 states and more than 70 countries from 6 continents. So basically he's a genius.
To Norah, I'm Mommy, diaper changer, food feeder, playmate...you name it. I'm HER genius and Mommy knows everything in her mind.
So I win. :)
So far, the drive to West Palm is smooth, weather is nice and we have a sleeping baby. Thank God because she meets "the big man" during her usual nap time. That should be interesting. Long day ahead, but we are looking forward to receiving some answers, seeing our future "home away from home" and meeting other families going through this. In a weird way, we both feel like we're headed to meet a celebrity. We've been learning about this doctor for the last 9months and have been communicating with his staff who think the world of him. So it's kinda like we already know them.
"USED COWS FOR SALE" .....just passed this sign. Sounds yummy.
That's all for now. We will have appointment details soon. Pray for our little girl please. :)
Friday, January 25, 2013
Knee Appointment Wednesday
Our next step was a knee appointment for Norah on Wednesday, January 23, 2013.
The last two months were more of a waiting period to observe the development of her knee.The goal was to see if it would relax and extend more on its own, if not, then we would begin some therapy to help with that. We are pleased to have received the following diagnosis:
*After her knee x-ray, he noticed a small bow in her knee that may straighten out over time or maybe not. Either way, with the lengthening procedure in the future, this is a small concern. She has an actual knee bone which is awesome because in some cases like hers, a bone may not even be present. Although her left leg is stiff and cannot extend the same as her right leg, he noticed she was kicking and squirming just as any other baby would so continue what we are doing with her as far as playtime is concerned.
*After her hip x-ray (which she protested greatly and broke Mommy's heart) we were so pleased to see her hip having some ossification present. In babies, the cartilage does not transition into bone until ages 6-9 months. So we were very happy to see that the process has atleast begun with her hip. We are very hopeful that she may be able to avoid having hip surgery, but we will not know for sure until her cartilage has turned to bone at age 9 months. At that point we will know if her hip is indeed "normal".
*We return to the Orthopedic in 4 months (WAHOO!) after meeting Dr. Paley first. We plan to meet him in June and go back to Orlando Orthopedic shortly after. It will be nice to have the next 5 months "off" from doctors pertaining to her leg. Once we meet Dr.Paley's group, we will have a timeline and exact diagnosis and will take that to Orlando Orthopedic to do the same.
We are so very blessed to have this news! We are so happy to be able to just enjoy her as a baby and watch her grow and change. She is now rolling over back and forth, kicking, babbling like crazy, laughing, beginning to scoot, sitting upright with assistance and excessively drooling. :) It is so comforting to see her meeting her milestones without any delays. Here are some pictures of Norah enjoying some playtime!
The last two months were more of a waiting period to observe the development of her knee.The goal was to see if it would relax and extend more on its own, if not, then we would begin some therapy to help with that. We are pleased to have received the following diagnosis:
*After her knee x-ray, he noticed a small bow in her knee that may straighten out over time or maybe not. Either way, with the lengthening procedure in the future, this is a small concern. She has an actual knee bone which is awesome because in some cases like hers, a bone may not even be present. Although her left leg is stiff and cannot extend the same as her right leg, he noticed she was kicking and squirming just as any other baby would so continue what we are doing with her as far as playtime is concerned.
*After her hip x-ray (which she protested greatly and broke Mommy's heart) we were so pleased to see her hip having some ossification present. In babies, the cartilage does not transition into bone until ages 6-9 months. So we were very happy to see that the process has atleast begun with her hip. We are very hopeful that she may be able to avoid having hip surgery, but we will not know for sure until her cartilage has turned to bone at age 9 months. At that point we will know if her hip is indeed "normal".
*We return to the Orthopedic in 4 months (WAHOO!) after meeting Dr. Paley first. We plan to meet him in June and go back to Orlando Orthopedic shortly after. It will be nice to have the next 5 months "off" from doctors pertaining to her leg. Once we meet Dr.Paley's group, we will have a timeline and exact diagnosis and will take that to Orlando Orthopedic to do the same.
We are so very blessed to have this news! We are so happy to be able to just enjoy her as a baby and watch her grow and change. She is now rolling over back and forth, kicking, babbling like crazy, laughing, beginning to scoot, sitting upright with assistance and excessively drooling. :) It is so comforting to see her meeting her milestones without any delays. Here are some pictures of Norah enjoying some playtime!
 |
| Right before rolling over |
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| Rolling back and forth on the patient table at her appointment! |
Monday, December 31, 2012
By faith....
I finally listened as He spoke to me. Earlier this week, He came into my heart because I finally let him. I cry as I write this because it feels so incredibly good to feel this way again. In my last entry, I spoke of my emotions and the struggles I was having and then a little birdie reminded me of something great.
The "DIWE Train".
Doctrine
Intellect
Will
Emotion
I was leading my life 100% based on my emotions and shutting God out of it...something I hadn't done for a long time since coming to the Lord. Rich and I always try to lead our lives based on God's word before we incorporate our own thoughts and emotions. I seemed to have forgotten that. I re-read this scripture OVER and OVER.
Proverbs 3:6 "Trust in the Lord with all your heart, And lean not on your own understanding. In all your ways acknowledge Him, And he will direct your path."
If I trust Him with only certain things, then I am not fully trusting and having faith. You don't get to pick and choose. For the last eight months, I have been completely consumed by worry, guilt and anxiety. From bedrest to childbirth to parenthood, I made those times so much more difficult. Hormones can't be to blame for everything. :) (maybe half?) I went as far as acupuncture to remedy my worry. I changed my diet, took special herbs and finally one morning, I let Him back in. I haven't felt that good in a LONG time. With all my worry I am saying I don't trust God fully. It robs you of your power to live. I'm learning again that it is okay to ponder something or have a prayerful concern, but it is a sin to constantly worry about something. Once you begin to lose your peace, you're venturing into worry which is just plain wrong. By faith, I have found myself again. With faith, you can understand all kinds of things that your head can't. I may not like the way something is or why God is doing what He's doing but I know He's working.
Gradually, I've begun to think about Norah's leg with a different perspective. She is Amazing...no, seriously...Amazing. She is so vocal and such a fast learner and is doing things I don't think her Dad and I expected to happen so soon. I think of why He chose us to be her parents and I understand now. She is ours and we are hers. God blessed me with a strong man who provides for us and protects us. Because of him, she will have the care she needs and also have her Mommy at home and I will have the ability to have her treatment be my first priority. God knew we had a huge family filled with people that want to shower her with love and care. He knew she would be raised to know Him and honor Him. He knew we would take care of her. She may be physically disabled but her heart is whole. She will love, laugh, play, make messes and we will cherish all of it. I think because of it, we will enjoy life with her even more. We won't take those messes for granted because she's able to make them.
It is entirely coincidental that the year is ending and 2013 is approaching. It is also a coincidence that I am writing this on December 31, 2012, the last day of the year. :) It just hit me that this is the time for New Year's resolutions, but that is not what this is. This is simply me just recognizing what I already had. The path I have chosen is much brighter then the one I was on. I hate to think about all of the precious time I have wasted this year on worry, but all I can do is keep walking this path and devote myself to allow His grace to touch my heart. I trust that in the times of doubt, I will pray as I used to and turn toward Him instead of my own thinking. I want to devote myself to reinvesting in my relationships that I have begun to take for granted. My marriage, friendships and family relationships have all taken a backseat because of my worry and fear throughout my pregnancy and my daughter's condition and I am deeply sorry. As we move into the New Year, I plan to let the Lord lead me as He led me to my wonderful husband and our beautiful, perfect little angel.
Happy New Year to our friends, family near and far and to all the fellow PFFD'ers in treatment or about to begin treatment. We wish you all blessings and great health this year. :)
The "DIWE Train".
Doctrine
Intellect
Will
Emotion
I was leading my life 100% based on my emotions and shutting God out of it...something I hadn't done for a long time since coming to the Lord. Rich and I always try to lead our lives based on God's word before we incorporate our own thoughts and emotions. I seemed to have forgotten that. I re-read this scripture OVER and OVER.
Proverbs 3:6 "Trust in the Lord with all your heart, And lean not on your own understanding. In all your ways acknowledge Him, And he will direct your path."
If I trust Him with only certain things, then I am not fully trusting and having faith. You don't get to pick and choose. For the last eight months, I have been completely consumed by worry, guilt and anxiety. From bedrest to childbirth to parenthood, I made those times so much more difficult. Hormones can't be to blame for everything. :) (maybe half?) I went as far as acupuncture to remedy my worry. I changed my diet, took special herbs and finally one morning, I let Him back in. I haven't felt that good in a LONG time. With all my worry I am saying I don't trust God fully. It robs you of your power to live. I'm learning again that it is okay to ponder something or have a prayerful concern, but it is a sin to constantly worry about something. Once you begin to lose your peace, you're venturing into worry which is just plain wrong. By faith, I have found myself again. With faith, you can understand all kinds of things that your head can't. I may not like the way something is or why God is doing what He's doing but I know He's working.
Gradually, I've begun to think about Norah's leg with a different perspective. She is Amazing...no, seriously...Amazing. She is so vocal and such a fast learner and is doing things I don't think her Dad and I expected to happen so soon. I think of why He chose us to be her parents and I understand now. She is ours and we are hers. God blessed me with a strong man who provides for us and protects us. Because of him, she will have the care she needs and also have her Mommy at home and I will have the ability to have her treatment be my first priority. God knew we had a huge family filled with people that want to shower her with love and care. He knew she would be raised to know Him and honor Him. He knew we would take care of her. She may be physically disabled but her heart is whole. She will love, laugh, play, make messes and we will cherish all of it. I think because of it, we will enjoy life with her even more. We won't take those messes for granted because she's able to make them.
It is entirely coincidental that the year is ending and 2013 is approaching. It is also a coincidence that I am writing this on December 31, 2012, the last day of the year. :) It just hit me that this is the time for New Year's resolutions, but that is not what this is. This is simply me just recognizing what I already had. The path I have chosen is much brighter then the one I was on. I hate to think about all of the precious time I have wasted this year on worry, but all I can do is keep walking this path and devote myself to allow His grace to touch my heart. I trust that in the times of doubt, I will pray as I used to and turn toward Him instead of my own thinking. I want to devote myself to reinvesting in my relationships that I have begun to take for granted. My marriage, friendships and family relationships have all taken a backseat because of my worry and fear throughout my pregnancy and my daughter's condition and I am deeply sorry. As we move into the New Year, I plan to let the Lord lead me as He led me to my wonderful husband and our beautiful, perfect little angel.
Happy New Year to our friends, family near and far and to all the fellow PFFD'ers in treatment or about to begin treatment. We wish you all blessings and great health this year. :)
Saturday, December 15, 2012
All the questions in my mind
To homeschool or not? To vaccinate or not? Do we need to go 100% organic or not? Can I keep her in a bubble forever? Probably not.
These are all questions running the marathon in my mind since becoming a mother. It seems like everytime I make a teeny, tiny step forward toward becoming less protective of her, I take two very large steps backward. Yes, I know feeling protective of your child is a completely natural thing, but the protectiveness I feel is suffocating. Between the Movie Theatre massacre, the recent shooting in Connecticut, the brutal massacre in China at an elementary school and the constant news coverage on harmful chemicals in cleaning products, food, you name it, I can't seem to make a step and stay there. I reach the mile marker and then something tragic happens and I feel overwhelmed with fear again. This doesn't even include the neighbors and friends that have a sick child or have recently lost their child....that makes me cling to her even more as I am sure alot of parents nearby are doing as well. I have family in Connecticut that live nearby to where the recent shooting took place. Too close to home it feels.
I used to take alot of things with a grain of salt. I was able to handle conflict, atleast I remember I could, but that feels like forever ago. I could process a tragic event, difficult situation, annoying opinion or any emotion for that matter with balance and logic. I want to be back there so badly.
Now I am happy to say, I am not protective in a way that smothers her or clouds her development. She is an extremely playful and happy child and I know it is because she is showered with love and respect. We respect her need to learn on her own and explore things through sight and touch. We teach her to reach for things on her own and encourage her to speak back to us among many other things. One of my main goals is not to become a parent that does EVERYTHING for my child. I want her to feel capable. I want her to carry her own plate and wash her own hands and entertain herself with her toys and so far I feel really confident we have encouraged independence (as much as you can with a 3 month old). She plays alone often and puts herself to sleep when she is wide awake. (Without crying which I am proud to say!) We don't overreact if she sneezes or call the pedicatrician every week. These are things that reassure me I am not smothering her. Where I feel like I am overprotective of her is with her care. This will always circle back to her disability. In my last entry I spoke about the guilt I feel for that and how I'm told I could not prevent it, although right now I feel like I could have. If she is home schooled, I can protect her from violence in schools. If I buy organic and vaccinate maybe I can prevent some awful disease from attacking her. Keyword is "maybe". I know I can't truly protect her from everything, but it doesn't mean I won't try. I'll hear her cry and a siren goes off in my head to remedy it as quickly as possible so she does not feel any pain or sadness for even a minute.
Through my attempt to cope, I have completely random moments where the sound of music brings tears to my eyes, or a dish in my hand feels like it will shatter. A playful diaper change or bathtime splashing can go from laughter and smiles to a sudden bolt of lightning reminding me of her little leg not kicking as hard as the other or making as big a splash as the other. My seven-year old niece was "babysitting" her on her playmat recently and very innocently asked why her pants were so big. "Her pants keep covering her foot", she said. We all just kind of sat there not knowing what to say. It made my heart ache for a moment because I hadn't really thought of how this will affect her or how it will feel for her Mom and Dad to have to explain it to her. I am comforted in knowing Norah will be under her wing though. I think when Norah begins treatment, she will be older and will be able to understand it better and probably even bring light to the situation as children do. I can picture her teaching Norah things and protecting her. These brief moments are slightly overwhelming but then I feel okay after. I like to think that is God's way of helping me cope. Those moments to me are better than not having them. Not having them would mean I wasn't on my way to acceptance. I am learning that allowing myself to feel what I feel and think what I think in that exact moment is one more step to being a better parent to her...a stronger Mother.
I am very slowly starting to regain my faith that I won't feel like this forever. I am so incredibly thankful for the other parents that began writing their own blogs. If I didn't have this outlet, I don't know that I would being seeing the very faint light at the end of the tunnel. For me being as open as I am, I can't seem to do this through conversation so it means so much to me to have our family and friends listening to our story through my writing. For our family, thank you for your patience. I know you all wish blessings and care so much about Norah. For all of our friends, relatives near and far and neighbors, thank you for reading...for caring enough to read. Thank you for sharing Norah's story with your own friends. It brings me comfort to know that so many people will be aware by the time she begins treatment and she will have that much more support as will we. I am not one to ask for prayers, but I have this one request. Please pray for our little girl. I want to pray for growth, capability, faith in medicine and hope. I pray that her father and I can take the advice we've received and enjoy her and not live in fear for the next year. I pray that we don't waste time, kill time or let it pass. I pray for myself and that God will show mercy on me and that he will help me find myself again in all the sadness so she can learn a positive example from me. I pray for Norah to emerge a strong little girl despite her challenges. I pray so hard that her leg is the only issue we will face with her condition. I pray for the children around her to feel kindness and support for her as she grows. And I pray for all of you reading. I pray that God blesses you, your family and your children with good health.
Blessings :)
These are all questions running the marathon in my mind since becoming a mother. It seems like everytime I make a teeny, tiny step forward toward becoming less protective of her, I take two very large steps backward. Yes, I know feeling protective of your child is a completely natural thing, but the protectiveness I feel is suffocating. Between the Movie Theatre massacre, the recent shooting in Connecticut, the brutal massacre in China at an elementary school and the constant news coverage on harmful chemicals in cleaning products, food, you name it, I can't seem to make a step and stay there. I reach the mile marker and then something tragic happens and I feel overwhelmed with fear again. This doesn't even include the neighbors and friends that have a sick child or have recently lost their child....that makes me cling to her even more as I am sure alot of parents nearby are doing as well. I have family in Connecticut that live nearby to where the recent shooting took place. Too close to home it feels.
I used to take alot of things with a grain of salt. I was able to handle conflict, atleast I remember I could, but that feels like forever ago. I could process a tragic event, difficult situation, annoying opinion or any emotion for that matter with balance and logic. I want to be back there so badly.
Now I am happy to say, I am not protective in a way that smothers her or clouds her development. She is an extremely playful and happy child and I know it is because she is showered with love and respect. We respect her need to learn on her own and explore things through sight and touch. We teach her to reach for things on her own and encourage her to speak back to us among many other things. One of my main goals is not to become a parent that does EVERYTHING for my child. I want her to feel capable. I want her to carry her own plate and wash her own hands and entertain herself with her toys and so far I feel really confident we have encouraged independence (as much as you can with a 3 month old). She plays alone often and puts herself to sleep when she is wide awake. (Without crying which I am proud to say!) We don't overreact if she sneezes or call the pedicatrician every week. These are things that reassure me I am not smothering her. Where I feel like I am overprotective of her is with her care. This will always circle back to her disability. In my last entry I spoke about the guilt I feel for that and how I'm told I could not prevent it, although right now I feel like I could have. If she is home schooled, I can protect her from violence in schools. If I buy organic and vaccinate maybe I can prevent some awful disease from attacking her. Keyword is "maybe". I know I can't truly protect her from everything, but it doesn't mean I won't try. I'll hear her cry and a siren goes off in my head to remedy it as quickly as possible so she does not feel any pain or sadness for even a minute.
Through my attempt to cope, I have completely random moments where the sound of music brings tears to my eyes, or a dish in my hand feels like it will shatter. A playful diaper change or bathtime splashing can go from laughter and smiles to a sudden bolt of lightning reminding me of her little leg not kicking as hard as the other or making as big a splash as the other. My seven-year old niece was "babysitting" her on her playmat recently and very innocently asked why her pants were so big. "Her pants keep covering her foot", she said. We all just kind of sat there not knowing what to say. It made my heart ache for a moment because I hadn't really thought of how this will affect her or how it will feel for her Mom and Dad to have to explain it to her. I am comforted in knowing Norah will be under her wing though. I think when Norah begins treatment, she will be older and will be able to understand it better and probably even bring light to the situation as children do. I can picture her teaching Norah things and protecting her. These brief moments are slightly overwhelming but then I feel okay after. I like to think that is God's way of helping me cope. Those moments to me are better than not having them. Not having them would mean I wasn't on my way to acceptance. I am learning that allowing myself to feel what I feel and think what I think in that exact moment is one more step to being a better parent to her...a stronger Mother.
I am very slowly starting to regain my faith that I won't feel like this forever. I am so incredibly thankful for the other parents that began writing their own blogs. If I didn't have this outlet, I don't know that I would being seeing the very faint light at the end of the tunnel. For me being as open as I am, I can't seem to do this through conversation so it means so much to me to have our family and friends listening to our story through my writing. For our family, thank you for your patience. I know you all wish blessings and care so much about Norah. For all of our friends, relatives near and far and neighbors, thank you for reading...for caring enough to read. Thank you for sharing Norah's story with your own friends. It brings me comfort to know that so many people will be aware by the time she begins treatment and she will have that much more support as will we. I am not one to ask for prayers, but I have this one request. Please pray for our little girl. I want to pray for growth, capability, faith in medicine and hope. I pray that her father and I can take the advice we've received and enjoy her and not live in fear for the next year. I pray that we don't waste time, kill time or let it pass. I pray for myself and that God will show mercy on me and that he will help me find myself again in all the sadness so she can learn a positive example from me. I pray for Norah to emerge a strong little girl despite her challenges. I pray so hard that her leg is the only issue we will face with her condition. I pray for the children around her to feel kindness and support for her as she grows. And I pray for all of you reading. I pray that God blesses you, your family and your children with good health.
Blessings :)
Monday, December 3, 2012
Just being truthful
People say when you have a child, you will do anything for them. This is an understatement. Any mother or father will agree that the love you have for your child cannot be expressed with words. It amazes me everyday how you can meet your child for the first time and feel that kind of love and devotion. To know that your purpose on this Earth was for that little person and that everything you have ever done, every mistake you have ever made, anything you have ever experienced and every person you have ever met led you to them. I thank God for my husband every night before I go to sleep for giving me this special gift. My family makes my heart whole even though right now my heart feels so fragile.
If I could give both my legs to my little girl, I would do it right now. I have strong legs, hips, knees and feet and I would spend my life without all of that if it meant her never having to endure any pain or fear. She begins her next stage in a month which will entail physical therapy for her knee. 3 months old....that is how old she will be when she begins knee therapy. Most children don't even bump their head by 3 months old. Her right leg continues to grow longer and stronger while her little left leg is just struggling to keep up. I didn't expect for the length difference to become what it is now so quickly. The more she grows, it seems like the shorter her other leg appears. I hate the unknown right now. I try to enjoy the peace and the fact that we do not have to subject her to much treatment right now, but lately I just want answers. I hate not knowing if her hip will be functional, if she will need one, two, three or ten surgeries or what her difference will be in a year. I hate the uncertainty of it all.
What I don't want for this blog is for it to become a "Mommy pity party blog" or a rant on the sadness my husband and I feel. We started this so those who care about her can stay updated and learn more about her condition while simultaneously giving me a chance to express my innermost thoughts. What I've realized recently though is that I need to release it and releasing it in conversation is much more difficult than releasing it through writing. I think most can agree that writing and sharing is entirely different than conversating one on one with someone and discussing your feelings. For me, writing is therapeutic and sharing allows me to feel heard by someone...anyone. I am not sure I could say any of these things with someone sitting right in front of me unless it is my husband who I feel pretty confident feels the same way and quite frankly is probably tired of hearing me talk. This is why I believe Facebook is so popular with people. People want to be heard. Lately I've closed off, mainly because I thought if I did it would go away and also because I hate to burden him. I can tell you first hand, bottling it up does nothing for you.
You would think that it would be getting easier as each day goes.
"It'll get better"
"Time will pass"
It doesn't. It feels harder. Those are famous words....words that for me right now mean absolutely nothing. However, those of you that continue to be in my corner and be supportive I can't thank you enough. I've been encouraged to do what I am doing now. I've been told to write, talk, cry, whatever I need to do to move forward. Majority of the time I feel suffocated. Not by people or by my little girl or my husband, but suffocated by the overwhelming fear I have for her, the guilt I feel and the future. Sometimes it feels like my chest is just going to explode and out will come the anxiety and the guilt and fear.Yet I LOVE being a mother to her. We dance and sing and laugh ALL the time. She is truly the most amazing thing I have ever done in my life. Pure joy.It is so joyful that I joke with Rich all the time about trying for another baby! And just like that....the fear seeps in. I immediately wonder if I will ever have the courage to carry another child. If my body couldn't do it right the first time, how can I trust my next child will be okay? I want another so badly, but I want them healthy more than anything. Most will think it is silly, but that's what goes through my mind everytime I think about another child down the road. Will I even be able to enjoy being pregnant as I look over my shoulder at every single thing I am doing, eating or breathing in. Lord knows, I would treat my next pregnancy entirely different than the first. And to be honest, I was pretty careful this first time.
Most people can't understand what her journey entails and I would never expect them to. To some it may appear as just a shorter limb. Boy do I wish more than anything the road ahead was as simple as that statement! There is so much more to her condition that we don't even truly know about and won't even know for a while until more time passes. While I am thankful that I have a daughter (as some can't conceive), thankful she is healthy (as some children battle for their lives) and thankful that hopefully....hopefully her condition will be someday corrected, I am angry. I am so unbelievably angry that it seeps into every other aspect of my life. "Melancholy" is a word I have grown to know too well. Some days, I'll step outside with her and breathe in the fresh air and sunshine and forget about it all and other days I'll fill my schedule with distractions. These distractions may be doctor appointments, errands or playdates....whatever they are, they distract me. I cling to my faith and I pray so deeply each night that His plan is a good one. I am not angry with God. He has moved what has felt like mountains over the last two years and I have always trusted in His plan. I still do. But right now, I am mad.
I want to conclude this post with an apology. The people that follow our blog know us well, they know me well. This entry cannot even begin to truly express the ache I have in my heart right now, but this is my attempt at sharing it since I can't seem to express it unless it is accompanied by irritability or negativity. Please know that everytime someone tries to shine light upon our situation , I know it is with well-meaning intentions even if I can't respond with gratitude. I hold my friendships so close to my heart right now. Funny facebook posts and pictures, playdates, stories about your children.....all of these things help me cope. I trust in the Lord that he will show mercy on me and that through all of this I will find the many blessings he is waiting for me to see. Thank you for your unconditional support and for your patience.
If I could give both my legs to my little girl, I would do it right now. I have strong legs, hips, knees and feet and I would spend my life without all of that if it meant her never having to endure any pain or fear. She begins her next stage in a month which will entail physical therapy for her knee. 3 months old....that is how old she will be when she begins knee therapy. Most children don't even bump their head by 3 months old. Her right leg continues to grow longer and stronger while her little left leg is just struggling to keep up. I didn't expect for the length difference to become what it is now so quickly. The more she grows, it seems like the shorter her other leg appears. I hate the unknown right now. I try to enjoy the peace and the fact that we do not have to subject her to much treatment right now, but lately I just want answers. I hate not knowing if her hip will be functional, if she will need one, two, three or ten surgeries or what her difference will be in a year. I hate the uncertainty of it all.
What I don't want for this blog is for it to become a "Mommy pity party blog" or a rant on the sadness my husband and I feel. We started this so those who care about her can stay updated and learn more about her condition while simultaneously giving me a chance to express my innermost thoughts. What I've realized recently though is that I need to release it and releasing it in conversation is much more difficult than releasing it through writing. I think most can agree that writing and sharing is entirely different than conversating one on one with someone and discussing your feelings. For me, writing is therapeutic and sharing allows me to feel heard by someone...anyone. I am not sure I could say any of these things with someone sitting right in front of me unless it is my husband who I feel pretty confident feels the same way and quite frankly is probably tired of hearing me talk. This is why I believe Facebook is so popular with people. People want to be heard. Lately I've closed off, mainly because I thought if I did it would go away and also because I hate to burden him. I can tell you first hand, bottling it up does nothing for you.
You would think that it would be getting easier as each day goes.
"It'll get better"
"Time will pass"
It doesn't. It feels harder. Those are famous words....words that for me right now mean absolutely nothing. However, those of you that continue to be in my corner and be supportive I can't thank you enough. I've been encouraged to do what I am doing now. I've been told to write, talk, cry, whatever I need to do to move forward. Majority of the time I feel suffocated. Not by people or by my little girl or my husband, but suffocated by the overwhelming fear I have for her, the guilt I feel and the future. Sometimes it feels like my chest is just going to explode and out will come the anxiety and the guilt and fear.Yet I LOVE being a mother to her. We dance and sing and laugh ALL the time. She is truly the most amazing thing I have ever done in my life. Pure joy.It is so joyful that I joke with Rich all the time about trying for another baby! And just like that....the fear seeps in. I immediately wonder if I will ever have the courage to carry another child. If my body couldn't do it right the first time, how can I trust my next child will be okay? I want another so badly, but I want them healthy more than anything. Most will think it is silly, but that's what goes through my mind everytime I think about another child down the road. Will I even be able to enjoy being pregnant as I look over my shoulder at every single thing I am doing, eating or breathing in. Lord knows, I would treat my next pregnancy entirely different than the first. And to be honest, I was pretty careful this first time.
Most people can't understand what her journey entails and I would never expect them to. To some it may appear as just a shorter limb. Boy do I wish more than anything the road ahead was as simple as that statement! There is so much more to her condition that we don't even truly know about and won't even know for a while until more time passes. While I am thankful that I have a daughter (as some can't conceive), thankful she is healthy (as some children battle for their lives) and thankful that hopefully....hopefully her condition will be someday corrected, I am angry. I am so unbelievably angry that it seeps into every other aspect of my life. "Melancholy" is a word I have grown to know too well. Some days, I'll step outside with her and breathe in the fresh air and sunshine and forget about it all and other days I'll fill my schedule with distractions. These distractions may be doctor appointments, errands or playdates....whatever they are, they distract me. I cling to my faith and I pray so deeply each night that His plan is a good one. I am not angry with God. He has moved what has felt like mountains over the last two years and I have always trusted in His plan. I still do. But right now, I am mad.
I want to conclude this post with an apology. The people that follow our blog know us well, they know me well. This entry cannot even begin to truly express the ache I have in my heart right now, but this is my attempt at sharing it since I can't seem to express it unless it is accompanied by irritability or negativity. Please know that everytime someone tries to shine light upon our situation , I know it is with well-meaning intentions even if I can't respond with gratitude. I hold my friendships so close to my heart right now. Funny facebook posts and pictures, playdates, stories about your children.....all of these things help me cope. I trust in the Lord that he will show mercy on me and that through all of this I will find the many blessings he is waiting for me to see. Thank you for your unconditional support and for your patience.
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