Walking down the aisle… the proudest mommy moment

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“The doctor leaned across my bed to break the news. He spelled things out and wrote them down. Every time he asked if we had questions, we didn’t know what to ask. We asked if she would be able to walk. He said he didn’t know. I cried some more.” ~October 4th, 2007

“I have a physically disabled daughter. It still hurts to say that.” ~October 7th, 2007

“We went into Children’s hospital and our physical therapist looked like a teenager. [...] They only had two other children come through with Arthrogryposis and only one could walk. His (the walking kid’s) physical therapist said it was nothing she did either, he just could. It turns out that babies with Arthrogryposis that have the leg joints stiff in a straight, outward way are more able to walk. Of course our baby girl has the wide open legs and hope seems dim.” ~October 10th, 2007

“We had our first orthopedics appointment! We called ahead of time to see if they were closed for the fires. Then we covered the baby, held our breaths, brushed the ash from our car and drove through what looked like Armageddon. What felt like little drops of rain turned out to be tiny bits of ash from unusually dark skies. [...] We were getting casts that day. :) We decided to try and fix the club feet with the casts and stretch out the legs (knees).” ~October 25th, 2007

Charles: “We got Laelia’s casts changed again today. My wife asked the doctor how far the knees could get straightened out. We hadn’t seen a ton of progress, and we were wondering if her legs would be straight enough for her to walk. “Oh,” the doctor replied, “we haven’t been trying to straighten out her knees. Right now I’m thinking that she’ll be wheelchair-bound, so her knees are at about the perfect bend to accommodate that.” ~November 19th, 2007

“There’s no cure for what she has. There’s no way to grow the muscle that she lacks. I can’t even get all her parts looking the way they should let alone moving the way they should. And she’s working toward goals that fall short of even the basic normal functioning of typical kids. Right now we’re focusing on getting her to be “less special.” ~December 20th, 2007

“Okay tonight is when we find out how Laelia’s surgeries went. We will discuss braces or more casting and it will be decided split second without a sit down.. as usual. As for more casting, our physical therapist told us that she will not be able to straighten out Laelia’s legs with stretches or therapy, so we are going to request more casting to hopefully achieve that. Unless our orthopedics doctor has major objections or doesn’t think that will work.” ~January 7th, 2008

“They didn’t cast the legs straight. We were told she wouldn’t walk. Ever.” ~January 10th, 2008

“We switched orthopedic doctors today (Friday). This new one also does not believe Laelia will walk either, but actually explained the physicality behind that belief. So even if she were able to be straightened out, she doesn’t have the muscle to walk. Even if we did a muscle transplant, the muscle wouldn’t work. Even if we could get her to stand, she would not be able to do so once she got to be around 60lbs since she won’t be able to hold up her own weight and her muscles will not grow with her.” ~February 15th, 2008

“I was curious as to how a doctor’s note could be three pages long. But what I was reading was the doctor’s impressions and findings in detail. I read over, “…significant deformity…significant upper extremity involvement…certainly require surgery…not significant leg power…goals need to be reasonable…I suspect she will come to utilize an electric wheelchair…the need for good upper body strength to control walker was stressed [to parents] (as in she won’t be able to)…toes will require flexor tenotomies at time of posteromedial releases…all of this was discussed in quite frank detail with the family, trying to paint a realistic picture, though not be overly pessimistic.” ~March 16th, 2008

“The EMG showed extremely poor muscle tone. What we had suspected was now proved on a test. The muscles in her arms and legs are in extremely poor shape. I start to wonder once again how her life will be.” ~July 25th, 2008

“Sometimes I forget what normal movement looks like and am amazed at what my friend’s newborns can do that Laelie will never be able to do. She will move, but she will use technology to help. Of course by the same token, there are a lot of things that Laelie will do that none of her new friends will be able to do. Like move a wheelchair with her head.” ~August 18th, 2008

“Everyday during PT (physical therapy) I get discouraged by Lali’s lack of movement. Stupid arthrogryposis! Stupid amyoplasia! If I try to do her exercises she throws a fit and refuses to do much. I try to encourage her to move her arms and legs, but she will just lie there and cry. And I really start to think, Will my baby ever move?” ~September 14th, 2008

“Laelia may never walk. I was sitting on the couch today playing with my baby and it dawned on me that my baby is not looking like she will be able to stand or walk or lift her arms. Her legs never got straight, her muscles never fired up or grew. Her therapists mentioned that she was one of the worst cases as far as muscle atrophy that they had seen.” ~September 21st, 2008

“Even with all the muscle loss, she is able to roll! That makes all the difference in the world! Now I’m hopeful she’ll be able to get around her home as an adult by rolling or scooting.” ~November 21st, 2008

“I saw two callus doctors today, and my experience was not that great. One largely ignored me while smiling. The other thought I was in denial of the severity of my daughter’s condition and took the opportunity to tell me that Lali “has severe joint contractions and muscle loss that will NEVER go away,” and I needed to “deal with that fact instead of searching for new splints or braces.” Do not treat a child like their worth is the sum of their workable body parts. And that their worth of your time is the sum of their fixable body parts (of which you’ve determined my daughter has little).” ~January 30th, 2009

“When checking out at Target the lady at the counter asked me if Lali could walk yet. I just said, “Not yet.”  The lady looked so confused. “Well why not? Have you tried?” ~May 11th, 2009

“We found out at our last trip to the PT that Laelia’s body is still not in the position for standing. That’s what the two major surgeries were for so we’re bummed as you can imagine.” ~November 21st, 2009

“At PT the other day they strapped Lali up to a giant suspension machine and moved her hovering self across the room while she kicked out her little feet to keep them from dragging. She eventually got a rhythm going: right left right left. She looked in the mirror as she went by and exclaimed with so much pride, “Laelia walking!” ~January 28th, 2010

“Laelia can now stand on her knees for ten seconds! This is her biggest accomplishment to date! Doctors said she wouldn’t be able to do this!” ~February 26th, 2010

“[Flew to Seattle to see another orthopedic doctor.] He said she wasn’t a great candidate for this (osteotomy) surgery, and to wait six months to a year to see if we should do anything with her. He said that 90% of kids with amyoplasia were ambulatory (able to transfer and stand), but it wasn’t looking like Laelia was going to be one of those kids.” ~April 3rd, 2010

“Tomorrow we’ll be in Philly and the next morning we’ll have our appointment with Dr. van Bosse at Shriners. [...] I’m also not sure if I’m ready to hear the straight truth from the arthrogryposis expert on my daughter’s care.” ~June 16th, 2010

“Dr. van Bosse is now our orthopedic doctor!” He said my baby will walk! ~June 19th, 2010

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“Tonight my baby took her first steps. My baby can walk! My baby can walk! My baby can walk!” ~August 31st, 2011

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Then it just snow-balled…

In September of 2011 Laelia knee walked for the first time. On November 1st, 2011 Laelia used a walker by herself for the first time. On December 3rd, 2011  Laelia stood independently without holding anything for the first time. The very next day she took her first independent steps and crashed into a couch.

 

Linda and Phong became engaged 21 days later and asked Laelia to be their flower girl. The kid was walking with crutches but we had no idea how she would throw the flower petals. It wasn’t until August 2012 that Laelia started to walk independently for long distances without her crutches and was hands-free. We practiced holding a basket while walking. She fell. A lot. We kept practicing. She fell. Rarely.

Last weekend Laelia the flower girl walked down the white runner towards the waiting bridesmaids and groomsmen. She walked with confidence. No walker. No wheelchair. No crutches. No falling or stumbling. She held her basket of petals with one hand and tossed them down the runner with the other. Her movements were like a synchronized dance as each action swayed her balance.

 

 

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Laelia was suppose to walk to a specific place near her grandma, but instead she walked straight to me. (I was matron of honor and standing up front.) She grinned up at me with such pride in her eyes, beaming like the sun! I walked her to where she was suppose to be while whispering my own joy and pride into her ears.

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They said she never would.

She did.

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Thank you God.

*tears*

 

20 Responses to “Walking down the aisle… the proudest mommy moment”

  1. Kiersten says:

    I remember each of those posts…..what a journey this has been. Very proud of Laelia and her family!

  2. Maria Ryan says:

    Tears of joy. Laelia is simply one of the strongest people I have ever known. Tears of pride for our amazing friend. Never ever say never. We love you people to the moon and back.

  3. Anonymous says:

    ok bawling over this. so amazing!

  4. Ani says:

    I just love this post!!!! Reminds me of all the emotions I felt when Abby was a flower girl for my best friends wedding! The pictures are precious!!! So very proud of you Laelia!! =)

  5. Melody says:

    Thanks for helping us relive these first years with you – I am crying as I write this! Laelia is such a testimony to the determination and endurance God can use in one very small person to challenge the rest of us “big” people – what should we be doing and why don’t we do it? What’s holding US back? Asking God to help us all see what challenges WE need to face off to shine for Him. Hugs to you and Charlie for letting God make you strong enough in Him to lead your strong little ones!! Hugs, hugs and happy New Year!!!! :-) Love, Melody

  6. Joann Smith says:

    Tears of Joy! answered prayers! PTL! I just read Melody’s comments and the easiest thing for me to say since I am a lot less verbal, “Ditto”
    I agree 100% Amen!!!

  7. Pamela Kles says:

    I can’t stop crying!! Feeling your pride!!! She is truly an amaziing child!!!! She looks so beautiful and proud of herself!!! I am so happy for all of you!!! What a wonderful day!!! GOD bless you all!!! (Congratulations to the couple who got married.)

  8. Jessi Spring says:

    This is so beautiful! Congratulations Mommy! Reading this, I cried until I had no more fluid in my body. I’m so happy that I have known you this whole time and got to see her in every stage of the “Learning to walk” process. Wonderful post.

  9. Tammi says:

    I remember coming to see you and Lali at the hospital a few hours after she was born. I remember being her nanny and doing her physical therapy every day. I remember praying for her and for you. How wonderful to see that God has answered these prayers. Praise Him!

  10. Patricia says:

    Sniff!

  11. Patricia says:

    ********** Sniff! *************

  12. Cheryl says:

    Best post ever!!

  13. Corrie says:

    So glad to hear you are at Shriner’s hospital. I have a daughter with arthrogryposis and it was the best decision we ever made. We were told that she would never walk either, but when we picked her up in China, she was already knee walking! She now runs and dances and rides a bike! Never – Never Give up – she will do amazing things – just not the way everyone else does them!

  14. Chris says:

    When Phoebe was born on Aug 26, 2006 we had already known since May that she had Arthrogryposis. Lisa and I said we would be happy if Phoebe walked by age 5.

    Phoebe’s AMC consisted of bi-lateral clubbed feet, bent contractures in her knees, splayed hips, and bent contractures in her elbows.

    Her first year she was treated at Johns Hopkins and after the AMC Convention in Arlington in 2007 we switched her treatment to DuPont Hospital for Children in Wilmington DE. Reenee Donahoe, arguably the foremost expert in PT for AMC, is a miracle worker.

    Phoebe had serial casting from her 2nd day to her 10th week. At 7 weeks they did tendon release surgery and fitted her with KAFOs.

    Phoebe had weekly PT visits at home through Early Intervention for the next 3 years, and then through Preschool Partners and Child Find.

    Those therapists and especially Reenee got Phoebe walking, with bent knees, in KAFOs with and without a walker, by age 3.

    When she was born, her legs would not go straighter than about 110 degrees (0 is straight). Over the next few years they would straighten, solely though therapy and bracing, to 60 degrees.

    But from age 3 to 5 the knee angle seemed to regress and in August of 2011 she had bilateral knee stapling to alter the angle of the knee and straighten the leg overall. At the time of the surgery her knee angle was 90. After a year and a half her knee angle is around 30 degrees!

    She walks in KAFOs without a walker, climbs stairs without anyone holding her hand, participates fully in school in a regular classroom, and she has even earned her Yellow belt in Taekwondo! Phoebe is now gaining strength in her quads, a critical factor in whether she will one day walk without braces.

    Lisa and I made an early decision to do whatever it took to make sure Phoebe could walk independently. And she has!

  15. Beth says:

    Gives me hope for my little girl (age 5) – she’s going to see Dr. Van Bosse for the first time next Monday.

  16. Lisa says:

    Hooray Laliea – we have the same feelings about Roger, he is to be the ring bearer at our neice’s wedding in October, there is no stopping these kids. Great Job Lali!

  17. Anonymous says:

    Crying… so happy for this amazing little girl. I cant even explain how happy i am to read all this. God is amazing. My He bless you with more courage, love and happiness in this journey.

  18. Felicia Breeden says:

    Tears of joy! Absolutely amazing!

  19. Let’s Help Alexandra Walk! | Bring Laurel Home says:

    [...] man to see. He’s given hope to countless children whose parents were told there was no hope. Here’s one mom’s story (we got to hang-out with her in Kiev). So, given the immense weight of the testimony of other families, we’re committed to taking [...]

  20. Linda Han says:

    I was just starting to read this and mentioned it to my husband (his name is Phong) and he asked me to read it out loud. Somehow (probably because of the reading aloud) I managed not to cry but now at the end I’m feeling awfully watery. What a blessing and joy it was to have you all there and involved in that day. What a dream come true for me (and you and so many other people) to have my niece walk down the aisle in my wedding. Glory to God. We are so grateful.

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