I'm curious. If you happen to read this blog and have a child (or a sibling or a close friend or a close friend's child) who has a difference/disability of any sort, would you let me know in the comments? I'm just curious how many other moms out there might be in my same world?
Thanks!
22 thoughts:
Hi Katie,
You know we do. :) 1 daughter with arthrogryposis who is a double amputee. A daughter with Restrictive band syndrome who has missing fingers, numerous bands and she is also an amputee below the knee. We also have our newest daughter who had traumatic brain injury and we are working on hopefully getting her to use her eye once again. Right now she is blind in that eye.... and then there is Anna.... she is happily fine....Oh, and Tim, who has Cerebral Palsy and is legally blind, and then there are Chuck, Joe and Marcus who are all happily fine.... and there is me.... does TIRED count? :)
Love reading your blog. You are such an inspiration. While I do not have a child with a difference/disability I do have a close friend whose youngest daughter has Down Syndrome. She too blogs (although not so much lately since all 3 of her kids are one the go) and she too is an inspiration to me!
My oldest has Autism and severe ADHD. Her primary diagnosis is
22q duplication which means she has extra genetic "material" on her 22nd chromosome. She is 8 and has fine motor skills in the 1-2 year range.
I have commented before ......my daughter is 32 yrs. old and has hydracephalus/spina bifida.
I am a Mom of three, my friend Crystal referred me to your blog. I have two boys (one William) and our third is our sweet Elianna (Ellie) who was born with constrictive band syndrome, or sybrachydactly (or something like that he he). She is almost 7 months and uses her affected hand quite well, but felt we should take her into a specialist, even though our pediatrician said he would wait.
Our appointment is this Wednesday, and I am excited to learn more about her hand. I was devastated at the news while pregnant, but thankful that we got the best case, instead of the worst they warned us about.
We now find her little hand adorably cute, and call it her Nemo hand. I'll be excited to read more of your blog.
My son Jackson has a chromosomal disorder called emanuel's syndrome. It affects the 11th and 22nd chromosome. He will be severely delayed both physically and mentally. He is 4. We have a 7 year old girl and a 2 year old girl both with no problems.
My son Michael is 19 months old and blind in one eye and his eye has stopped growing. We will be finding out today if we need to be fitted for an eye shell to keep his bones growing properly in his face. Michael has retinopathy of prematurely, cataracts and some vision loss in his good eye. Your blog has helped me so much, thank you.
Katie-I love to read your blog and see how your sweet kiddos are doing. My son Will is 4 and has Down's...we attend church and Sunday School with the Stokes--so we have prayed for Will and Ellie many times and continue to do so. Thank you for sharing your lives! :)
Your blog is an inspiration!
I have two boys (ages 9 and 11).
The 11 year old has ADD and anger issues.
My 9 year old has MAJOR anxiety issues (to the extent the therpaists have never seen in a child his age). He has been hospitalized twice.
Talking with other parents it seems that all children have some sort of issue; you may not just be able to see the difference on the outside.
Hi, Katie. I have Nadia who has no arms and PFFD in her right leg. I really enjoy reading your posts and am hoping you guys can make it to camp this summer!
Hi Katie,
I was referred to your blog from my birthmother who knows your mom from college (I believe they were in the same sorority). We have been blessed with 3 beautiful gifts from above! Our oldest (a girl) is almost 4 yrs. and then we have a set of boy/twins who are almost 17 mths. old. Our son was born with a rare genetic spinal disorder (Klippel-Feil Syndrome). It causes fusion of some of his cervical vertebrae and almost his entire spine is made up of malformed vertebrae/missing discs resulting in congenital scoliosis/malformed ribs. Other organ systems are affected but not as severely as his spine. He's had 3 surgeries to date and is looking at possibly 2 more by the time he turns 4 yrs. His differences result in a shorter neck/torso with a loss of range of motion in his neck and being shorter in general. He's followed by multiple specialists like your children and I am thankful we have moved into the "follow-up" period of his care for now. Although last week we had 3 appts. with different specialists and it brought back memories of those first few months!
We, too, are lovers of Jesus and lean upon Him for everything. You have been very encouraging in my walk with our Lord. Thank you for sharing your life in this way. Prayers of peace for your entire family!
Amy
Katie,
My 1 year old daughter was born without her left arm and now our main issue seems to be preventing scoliosis. We have visited the hand clinic (not too much help in our case) and the scoliosis clinic at Texas Scottish Rite so I can relate to some of your visits there. Thanks for sharing your journey!
Hey Katie,
Isabella has Turner's syndrome. Other than height and fertility, I am not sure how it will affect her. She appears to be normal developmentally, but I guess it is still a wait and see.
Love to you and your kiddos!
Cheryl
I was referred to your blog by my mom, who is a friend of your parents...My youngest sister (my mom and dad's youngest daughter) is 19 and has a chromosomal disorder called Angelman Syndrome.
I also have a dear friend with a 3-year old who has no official diagnosis, but reminds me so much of your Ellie.
I love your blog and appreciate your honesty and your beautiful writing. I have 3-year-old twin boys myself. Among MANY other things I have taken away from your blog, I have appreciated your reminder to always speak respectfully of my children (especially) in their presence as their ears are ALWAYS listening to what their mom is saying about them.
I admire and respect you so much. Do not be discouraged :)
Not a mom, but I have a son, age 12, who is deaf (has a cochlear implant), and a son, who is 7, who has CP. The other 5 have no permanent disabilities.
Katie,
I love your blog. I have a 1 year old daughter who was born missing her right arm below her elbow. Your blog helps me prepare myself for situations that I'm sure we will experience like you have.
Your attitude is an inspiration. I think I end up in tears every time I read it just because I'm not sure I can be as strong as you!
Thank you for blogging!
Btw, have you heard of the lucky fin project? If not you should check it out.
Growing up, a good friend of mine had an older brother with a limb difference. We never asked any questions and just accepted that Matt was born with a different hand than the rest of us. I always remember him being VERY successful in sports. We played softball, he played baseball. He has grown up to be such a well rounded, compassionate gentleman. He continues to play sports and works in ministry in LA.
I have read your blog for a while and just think your children are so beautiful! I also admire your outlook and they way that you carry yourself through your writing.
Your children are so lucky to have you as a Mama!
My dad, Tim, has Hanhart's syndrome! His left hand looks identical to Will's right. I often laugh, and cry while reading! I read the stories and think of the stories my dad has told me about his childhood !
Hi Katie, my name is Michelle, and I am Jennifer Taylor's friend (used to live next door). I have a two year old boy, but I've struggled with having multiple miscarriages. Jennifer told me about your heart for miscarriage and grief and loving Jesus in the midst of it all. I truly come read your blog on days when I'm just in the pits and missing my babies in heaven--and I am always, always, always encouraged to keep trudging on. Thank you for your faith and courage!
Michelle Steele
http://lifeatthesteeles.blogspot.com
Hi Katie,
I have enjoyed reading your blog so much! It has given me a glimpse into what a portion of our future may hold with our little AMC baby. Thank you for being so open and honest - we are blessed by you!
Katie,
My sister in law referred me to your blog. She went to Baylor and one of her roommates was friends with you (at least I think that is the story, I kind of forgot). My daughter (almost four) was born with a cleft lip and palate and we have struggled with failed surgeries, speech, her anxiety and feeding problems. I have enjoyed reading your thoughts and think that your honesty, strength and determination is amazing!
Katie Linhart
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