Sunday, October 12, 2008

Special connections.





I have had several emails in the past few weeks as well as a few comments asking me different things about Wyndham and her special needs. I have no problem talking about her condition and have doneso in posts here from time to time. Apparantly there are quite a few 'new people' reading and so I thought I would just give some details and a little update on how Wyndham is doing these days.
The photos you see here were taken just today. I thought they were special {as I think ALL the photos I take are special} but moreso because they capture Wyndham and her growing connection or understanding of who Crew is on our lives and hers. I was going to just snap some photos of Wyndham in her room, so I laid Crew done on her bed while she did a short photoshoot. Of course I had to snap some of Crew too, but I loved that I got a few of the two kids together.
I asked Wyndham if it was okay that Crew was sleeping on her bed and she flashed me a big grin. I knew that smile meant "yes". She is getting more and more comfortable with having a baby in the house, and even getting more and more interested in him when he squirms or squeaks or just sleeps. I didn't capture the kiss she gave him in that one picture, but it was very sweet and gentle and it's obvious that she is loving him more and more each day. Just like the rest of us.
We often 'forget' that Wyndham has 'special needs' and I write special in quotes because I really think all my kids have special needs- Wyndham's are just more pronounced and often take medical interventions and extra resources. Her issues came about as a result of a closed-head injury which she received at the time of our incident in which Teagan was killed and the rest of us injured at the restaurant back in July 2001. Wyndham was strapped in an infant carseat and was just shy of 7 months old, and weighed about 9 pounds. She was small but was meeting milestones and doing very well with her development. With her head injury, she spent several weeks on life support and ultimately ended up having brain surgery and a permanent shunt placed in her head.
Based on the severity and location of her internal brain bleeding, the neurosurgeons were not all that promising of her prognosis. Some just told us, "she'll likely never walk or talk", one said, "she's retarded" and then one told us she couldn't predict how or what Wyndham was capable of learning or understanding, but that the best thing we could do for her would be "to treat her as normally as you can and wait and see what happens". That's basically what we have done for the past 7 years with Wyndham. She has been in ongoing therapy since leaving the hospital in August of 2001.
We've been amazed at times at the progress and things she has learned and mastered, including walking at age 4 and 3/4 years old. Nobody tries harder to meet her goals and 'be like the other kids' than Wydham. She pushes herself more than I would, if I were her, and rarely "complains"- even if she doesn't like what she has to do.
Her speech is her biggest issue at this point. She has been learning American Sign Language for a couple of years now and knows more than 300 signs. However, she rarely uses them unless she is prompted to do so. Meaning, she can be dying of thirst and even though she knows the sign for drink or even specific types of drinks (ie. water, milk, juice), she will go thristy rather than show you she needs a drink. There is a big disconnect as a result of her head trauma which somehow blocks the messages from getting out. Wyndham can hear fine and she also makes sounds- she laughs and hums and mimics and even has said a few words, but we don't know if she will ever talk fully or not. We keep working on that and we are always hopeful!
For those of you who have asked about sign language, I recommend "Signing Times" as a resource for learning sign language as well as for great products to enhance learning. Wyndham has several dvd's and they have been so good for her, for me, and for the rest of the kids to learn basic words and phrases. There are also some great books available that make it easy to learn the basics. I encourage anyone to learn the alphabet and simple signs- it seems like more and more people are using sign these days for many reasons. One of the biggest concerns for Wyndham is that she is learning lots of signs, but that creates a growing gap in the way others can communicate back to her. The more people that know and use sign around her, the more it reinforces what she knows and opens doors for two-way communication.
I never thought I would be a mom of a handicapped child. Oftentimes when I put the little hanger up on my rear-view mirror I feel sort of 'funny'. I don't always feel like Wyndham fits the typical profile of handicapped, and yet technically she does. We have tried so hard as a family to 'be normal' and to just do all the things we would usually do, and yet there are things that are challenging to us and still cause us to be 'labeled'.
I hope that sheds a bit of light on our situtation for some of you new readers. We thank God for sparing Wyndham's life even though we have had to struggle with her and she has had some uphill battles and many setbacks through the years. We know that God has allowed her to overcome so much and we love that He has healed her in many ways. She is such an easy-going girl much of thetime, and she brings lots of joy and happiness and smiles to the people around her each day. She attends half-day kindergarten [3 days a week] in a regular classroom, she has therapy [PT, OT and speech] 3 afternoons a week, and then works with an independant assistant 2 afternoons a week. So she is busy learning all the time.
We always apprecaite prayers for her health and growth and learning. We love that she is doing so well right now and really, if you saw our family out and about, you would likely think we are just a 'normal family'. We have all worked hard to pull that off. =) Hopefully we will look back and see that some of these special challenges have not only been overcome, but have also allowed all of us to make special connections with others we might never have had the opportunity of meeting in life. Wyndham's needs have made us more aware and more sensative to others, and even though I don't wish special needs/handicaps on anyone, I have to admit in many ways they have been very good for all of our family. For that we have been changed forever and we feel blessed to have such special needs.

34 comments:

Amy said...

i love the 2nd photo of her looking at him. makes me wonder what all is going through her mind and you can totally see the love she has for him. :)

Sara said...

This was a great post, Jody.

There are so many times during the week Wyndham will pop into my head. My life was totally "normal"... more than normal really... my life was excelling. Over the course of the past 15 years or so I have dealt with a progressive disease and now (at 35) I am physically disabled, sick, in pain and completely homebound. I know what I, as an adult who is able to fully process my situation, have gone through to learn to accept my life. And I admire so much what Wyndham has been able to do with hers.

I'm writing because I want you to know I get it... the part where you feel blessed because of the disability, not despite it. My life is difficult, but I have blessings and life lessons and friendships that I wouldn't trade for the world. Because something is difficult it doesn't mean it's bad. It just means you have the opportunity to slow down long enough to count the blessings.

So Blessed said...

Jody, you are such an inspiration...and you have the most beautiful, special family. All of you are very blessed and are a precious, living testimony of love.

Rays Family said...

Thank you for this post Jody, your timing was perfect.

Shawn said...

Hi Jody, Your Wyndham has the most piercingly beautiful blue eyes I have ever seen. She is gorgeous as are the rest of your gang. Thank you for telling her story and for the inspiration you continue to be through your blogs about everyday life. Crew looks like your hubby! :) Shawn

Hillary said...

So, I just have to post tonight. I was just reading your post about Wyndham and the first word that came to mind was "hero". She's only a little girl, but she has taught me and so many people so much....including the fact to keep trying. She's got so much perseverance. She tries so hard and does her best and that is so awesome....

Anyway, tell your little hero that she's touching a lot of people and making them try even harder. :)

Also, Crew is so freakin' adorable. I love the pic of him sticking out his tongue....

Jennifer said...

What sweet pictures!! So glad I got to meet Crew (and Chip!) this morning- thanks for letting me snuggle with him (Crew, not Chip ;-) for a couple minutes! :-)

(Glad you got to meet Phil, too. It took a minute for him to remember you are one of my online friends, but I'm glad he came over to introduce himself! :-))

Jaci said...

Those are great pictures of both of them together. She sure has come along way from the accident in 2001. Your family is so great. I bought signing time DVD's a couple years ago for my kids, to teach them sign language for no reason in particular I just had saw them somewhere. I think there great, my 1 year old knows More and Milk, they love Alex and Leah. It is good she knows sign language to communicate.

Anonymous said...

Jody, you are truly an inspiration. You have faith when most poeple wouldn't. I was wondering if there was a mistake in the entry because the weight you stated for Wyndham was 9lbs at 7 months. My second was 9lbs at birth, and thus this was very suprising for me.
keep writing your life is amazing

Wendy said...

Thank you for sharing. Good to hear that Wyndham is continuing to progress.
I have a brother who is autistic/retarded and he has impacted our lives forever also.

Marisa Le'rin Salas said...

That really was a wonderful and loving post about your children! Wyndam is a beautiful gift from GOD, and I believe in my heart with out a doubt GOD will completely heal her in his time and when it's his will!
You will continue to stay in my prayer's.

Anonymous said...

WOW Jody, you are amazing, and you and your family is an inspiration to so many of us.
What I find so amazing is that you had (so many!) more children, even though Wyndham takes up so much of your time and energy. I have 2 perfectly normal daughters (age 4 and 6) and I just can't get myself thinking of having more children. But then you are such an inspiration, and it makes me think, maybe I should have more children. Definitely something I need to pray about ....

Jo said...

I think she will love being a big sister.....she is a true blessing and I feel blessed to have been hugged and kissed by her.....
Wyndham....big hug
x

Carrie said...

Wow. I had no idea. I've been reading your blog for a few months now but just as new readers have come along and asked, I've never bothered to do so...and that's partly because you are a "normal family". Can someone please tell me what they consider "normal" now and days anyway? You have such a beautiful, fun-loving family and I truly enjoy reading about your lives. Your son is a beautiful addition and Wyndhams story is tragic but I can see through her pictures the joy and happiness she has in her life! God Bless!

Mariangeles M said...

I've loved to read this update :)
Thanks!

mindibz said...

What a wonderful, inspiring attitude you have! Thanks for your open, honest posts. You have a beautiful family and a lovely way with words.

Jennifer said...

Jody,
Thank you so much for sharing these precious pictures! Your children are all adorable! Wyndham is such a sweetie and has a wonderful personality just like her mommy! I appreciate you taking the time to explain things as I agree sometimes people just don't understand. Crew is such a little sweetie too. I love the close up shots that you were able to get of him! Enjoy the week! Oh, what is Crew going to be for Halloween? I have not decided about Addelynn and Alexander yet. There are too many cute things out there to choose from. Oh, check out my blog too for a giveaway!

Vicky said...

Thanks for more transparency and for taking the time to continue to share your life with all of us. I find new ways to admire you all the time!

Madeline said...

What always amazes me, Jody, is that you never seem angry. I would be so filled with anger and hatred for the woman who took your Teagan and almost took you, Chip, Brock, and Wyndham. I don't know how you do it, but you are amazing. Your family is beautiful.

katemcdonald said...

What a beautiful post, Jody. I have two adopted brothers who also have "special needs" as you so aptly put it. Matt is 20 and has the reasoning of a 6 yr old. He has a wonderful sense of humor and is one of the most joyful people I know. He will likely never live away from my parents and although I know some people lookat my parents in pity because of that, we don't ever pity our family. Matt has given us amazing gifts- compassion is at the top of the list. Matt had a severe cleft palate and communication is a struggle for him too... I also have a almost 7 yr old brother Joe who learns at a different pace than others. HIs bio mom didn't care for him and as a result he has severe lead poisoning that has changed the way his brain functions. With all of the things he will do later than others, he has a tender heart that would shame most adults. I know sometimes my mom worries about him, but I know there are far worse things in life than raising a child who experienes the world differently but has a beautiful heart,

Kudos to you and your amazing family. You are an inspiration

lori said...

thanks for talking about your sweet girl..

kristy mae said...

In the second photo, you can clearly see how much she loves him :)

Lori said...

The pictures were great! You can just see the love in her eyes. So sweet! Your blog is such a blessing to all who read it.
Lori

Angie (Angelica Grace Designs) said...

Thanks for this post Jody. We have a "special" needs daughter who is 5 and in kindergarten this year too. I know I've written you before but I wanted to pop on and say thanks for being so transparent as special needs parent today. From one mom to another, it helps so many. My daughter (whom you can see all over my blog when you log on there) was born with hypotonia- a.k.a. low muscle tone. Although very different from your daughter's ordeal, they share a lot of the same developmental delays. We are now trying to sign more with Kenidi in an effort to get her verbalizing more. She says basic words like, Mom, Dad, eat, juice, sleep, etc. but has yet to put words together or a sentence at this point. I was afraid to introduce signing at one point in fear it would cause her to toally quit talking and rely on signs in general. However, that has not been the case. She is actually more verbal now that we sign with her.

Anyway, I just wanted to commend you on what a great Mom you are to all of your children and to give you a big high five today for pushing on when somedays it is hard to do. I'm there-I know. Keep smiling and keep believing. God has big, big, plans for our girls. I just know it.
PS...Congrats on Crew! What an absolute doll baby~!

Hugs & Blessings, Angie
www.angelicagracedesigns.com/blog/
www.angelicagracedesigns.com

Anonymous said...

Dear Jody,
I am writing for the first time, although I have been reading your blog for some time now. I hate that it is going to put me as anonymous, because it seems so "shady" but I just have not had the time to start my own blog. First let me say that you are a remarkable woman of God and you have persevered through so much. Your family is absolutely gorgeous and the Lord's hand is truly evident in a all of your lives. You have handled so many things with grace and dignity and I admire you for that. I was really glad that you did a post about Wyndham, because I too, like many others had wondered from time to time what her needs really were. She is a beautiful girl with a very contagious smile and you can definitely see that all her brothers and sisters adore her. There was just one thing about your most recent post that didn't sit well with my spirit and I hope that by writing you this will not come across as critical. Oh dear Lord, do not let this come across as critical. I honestly have been praying over whether or not to write, and this morning I did feel led. So here goes....the comment about not "wishing special needs kids on anyone" seemed really harsh to me. And this is why....I believe it is really easy for others to say things like that when they are able to have other healthy, biological children of their own. I am not one of these people, nor is my husband. For some reason the Lord has not made that our thing. But what He has done is allowed us the privilege of a ministry towards special needs children. We have adopted two so far. Cody has Down Syndrome and is 4yrs. old and Izzy Cate is 2 yrs. old and has a severe neurological disorder called semi-lobar holoprosencephaly. They are the most amazing kids we could have ever asked for and we would like nothing more than to adopt more if that is in His will. So for me, I do wish that upon myself, and I believe that there are others out there as well. Even though there are days that are so incredibly hard I don't know if I can do it. So I can feel your pain when you have days like that with Wyndham. Again, I don't write this to be critical, but my children are the "wishes" come true for my husband and myself. I do have a caring bridge web site for them if you would like to meet us. It's the closest thing to a blog that I have given my time constraints. www.caringbridge.org/visit/codyandcatefite
Again, Jody, maybe you didn't mean that comment by how harshly I took it. So please receive this e-mail as one sister in Christ to another and from one mom to another. I do pray for your family and I look forward to always following your story. God's richest blessings to all of you. In Chist's Amazing Grip, Sincerely, Tami Fite

km said...

This is my first post, althought I have been reading your blog for few months. You and your family are such an inspiration. Wyndham is such a beautifyl girl, she looks happy on all the pictures, what a treasure. Congratulations to you for having such a special family

Michelle M. said...

I have just come to your blog for the first time from the Hummel's blog. I've really enjoying reading and getting to know your beautiful family. You will all be in my prayers.

Jackie said...

WOW ! To me, that last picture of Crew looks so much like Wyndham !

So precious !

Your family is such a blessing.

Love,
Jackie

Viv said...

Hi Jody,

I like to read your blog!!
I`m a `new` reader (just 2 months), love your photo`s and the things you write down here!
Love, Viv

Kendra said...

Jody,

Thank you for sharing a special post about your children. Loved the picture of Wyndam admiring Crew.

Both my siblings have "special needs" so I feel like I relate to you and your family.

Mona_63 said...

:* from Poland :D

Marlene said...

Thanks for the update on your sweet little girl. It is helpful to know what to pray for and I admire you so much and appreciate the thanks you give to God.

Jennifer said...

Jody,
This is my 1st post, but I have been following your blog for quite awhile. You are such an inspiration to me and I believe that The Lord is using you and all of you experiences for wonderful things!
Blessings to you nad your precious family,
Jennifer

Erin Merryn said...

Curious if you ever watch John and Kate plus 8?