Tuesday, March 22, 2011

Blogging for AJ!

Many of you tell me I was your 'first' or I helped you in the beginning. Well, Christie was the one that helped me. I know you ALL know her...everyone does. She needs us. Her son needs us.

AJ is already in an institution. His mommy, my BFF, is working desperately to save him and get him out of there...every day is a day lost for AJ and all his skills and knowledge he has learned. It is likely that his days are now much more bleak than we ever thought the baby houses, or orphanages were.

Please help Christie and her family bring AJ home. Christie brought Peter to us and we are now trying to help bring AJ home to her. Christie and I were deeply connected by our two boys long ago on a little site called BBC and our friendship has flourished since then. It has mostly been Christie helping me through those tough days in the beginning when I didnt understand why working with Kai for 2 months straight on sitting yielded absolutely NO results and I declared my hatred for Down syndrome...Christie gently in only the way Christie can, told me...You know how much therapy I do with Joseph a week? NONE. I play with him. I play with all my kids. Wha?? I was stunned. You mean to tell me you dont spend 40 hours a week propping him over a drum to make him sit? LOL...So the ME in me let go a little, OK, a LOT, and I did what this crazy woman from Kokomo that I had never met told me to do.


In a month he crawled. Another whatever he sat...out of order, of course! But it all went well from there. Weve had a few bumps, like food textures, but eh, we will get over them. Christie taught me how to let go of the anger and see my son as he was...a little boy. And once I did, my fire was lit. And will stay lit for my kids and for hers. The momma bear in me would come out just as strong for one of her boys as it does for my kiddos...so I will help her raise money to get her son home. If we didnt know each other I would not have found Peter and who knows how long it could have taken her to find Alexander in her plight to find someone for Peter?

Please please...if you are here to donate to my journey to bring Peter home, I ask you to give the money to AJ. AJ is in dire need to get home. Peter is too, but much of his grant is raised already, so please take your money to him. If you feel strongly about it, give most to AJ and the rest to Peter...give enough to at least qualify for the great giveaway of the iPad that Christie is sponsoring! Just click HERE and go see for yourself! Alexander needs to come home now!

This is the last picture of AJ before he was sent to the Adult Mental Institution...I hope that smile is still there.


Monday, March 21, 2011

World Down Syndrome Day 3-21

Why 3-21? Because there are 3 copies of the 21st chromosome! That's why.

Usually today I would blog of FB about all the great things DS means to me and how awesome Kai and how much he has changed our lives, but this year I decided to pose the questions to others. I asked on FB for people to tell me how knowing Kai and our family has changed them or if they have known before having Kai, how he has changed me, from their perspective. I liked it a lot, and loved the answers. So for my blog today, I am going to post all the replies. Call me lazy, but Im working my 3rd night in a row and cant see straight, so this is my feeble attempt.

Also, if you would like to leave a comment here with an answer, that is fine by me as well.

Happy Down Syndrome Day!!

Julie Everett Kehm

So, instead of me telling you what having Kai and DS means to me today, I'd like you to tell me how knowing Kai and our family has impacted you. Or if you knew me prior to Kai, how has it changed me.

Rea W Can I say how much knowing you and Kai has changed my life and the way I view people??

19 hours ago · LikeUnlikeJulie Everett Kehm ♥ Rea

I hope to see lots of comments when I get up tonight

19 hours ago · LikeUnlike · 1 person

Page M Oh wow...not that you were not a wonderful person before, but you have blossomed as mother and advocate for children with Down's Syndrome. You have an unmatched passion for your family and he is the glue! As you have siad so many times yo...u found your calling and your passion. I think Kai and your family have open the eyes of so many people that may have not known much if anything about DS, and shown them what wonderful world it is with them in it. I have never judged a book by its cover, you know that about me. Everyone has a battle they fight whether it is noticable or not. BUt I see Kai accomplishing things way beyound what is thought normal for him.....and you are the driving force for that. So maybe these other mothers can look at you and Kai and see....their are no limits to your child...only the one you impose! Love you guys with all my heart! You have made people see that Kai is just a little boy, like everyone else....his DS is no differnet than having red hair or green eyes. It is part of him and a wonderful part at that!

19 hours ago · Cathy H-T You were one of the first moms I "met" after having Lily who had a prenatal dx. I couldn't believe how strong you were, knowing you were carrying a child with Ds. If you ever had any doubts, you sure didn't let it show. I so admired that...still do! Have a beautiful World Ds Day and give Kai a hug from Lily and me!!

19 hours ago ·Cathie A-T You have always seemed to embrace Kai (and the dx)!

19 hours ago · Anna B-T Dear Julie, you guys have have helped me see that we are not alone in this world. That we are all more alike than different. Oh and that I am thinking of Kai as a future husband for Ellie :-P

19 hours ago · Teresa P Julie, you're a true inspiration to any mother. Your strength and will power to provide Kai with the best of th best and active approach to make the world better speaks volumes of your character. Even though we have never met in person... You have changed and created a new look on DS for me ♥

19 hours ago · Christie Taylor well since he has been born I've gotten the new best friend , a sister , a shoulder, someone willing to walk a mile with me, a momma bear whose always got my back. and the best part is I got all of those even though we have never met face to face I love you julie

19 hours ago · Jo M MY dh & I decided to NOT have any tests done while pregnant with Joseph. No matter what the out come we loved or baby for whom ever he is and wil grow to be. Joseph is normal and could not imagine feeling any differant about him.....although he is currently stuck under a glass table & cant figure out why he can't stand up. Lol!

18 hours ago · Elissa F-L Wonderful idea. Can I steal it? I don't "know" you guys, but I have loved following your adoption journey and seeing what a wonderful family you are.

18 hours ago · Kristin M I would have never met you if hadn't been for Kai having DS! And I am so glad we met : )

18 hours ago · Cameron Kehm Before Kai: Julie didnt like me very much, she worked all the time and we never spoke. After Kai: Julie didnt like me very much, she workes all the time but now we speak! She asks me stuff like ... Really??? WTF???? and OMG???? Because of Kai I now have a dialog with my wife, even if its one sided!!! LOL LOL Being Seroius: I watched the woman I love turn into a mother and wife I respect and become stronger than I think even she ever thought she could become. I love you and our chrildren with all my heart!

18 hours ago · LikeUnlike · 1 person

Stacey L What's so nice is watching how u have changed so much over the years. You went from not wanting any children at 18 to be a great mom that has taught me so much about endless love for her family. U are a great mother and a wonderful person. I never knew so much about ds until u taught me. Peter will be so lucky to have u for a mother!!

18 hours ago · Carey M-D Changed me? Saved me is more like it! I thank God for you every single day!

17 hours ago · LikeUnlike · 1 person

Danielle A Seeing how strong you and your Family are, Makes me want to be a better person/mother/wife! Forever greatful to know you and all your wisdom you bring to everyone. Your Family is absolutely Wonderful, and Kai has everyones Heart. ♥

17 hours ago · LikeUnlike · 1 person

Jennifer P Julie, I've never met anyone like you. How lucky Kai and Lilah are to have you as a parent. No matter WHAT the issue, you are a crusader for them AND any other children that might be affected. Yes, DS is the big leader when it comes to y...our passion and fight, but you will do this for anything. Defective toys don't stand a chance staying on the market. Websites run by ignorant minds will change their way of thinking. Mothers & fathers who feel scared or unprepared walk away from you with STRENGTH, PASSION and overwhelming love and acceptance. Knowing you, I have learned SO much about DS, and I have honestly never met or known anyone with DS. I never had the chance to know how I would have reacted or what I would have assumed about any person I would have met with DS. And now, I am fortunate enough to have met you and have learned to open my mind up more about not only DS but in many different types of life's situations and experiences. Sorry so long. ♥ xoxo

Tuesday, March 15, 2011

Out On a Limb

Originally posted on FB on December 12, 2010

I try to help new mommies when I can when they get a surprise at their baby's birth. Its a fine line and I usually dont cross too far until tests come back. For reasons I dont know, I went all out this weekend.

I encountered a possible 'new Mommy' at work this weekend, Friday night. I knew they were testing. From the doorway of her room in the NICU I can tell she is going to be one of ours. I smile on the inside only, as I look into the face of her momma who didnt know, who still doesnt know for sure...but has that lost look of despair, hope and undying love. Im the only one who sees this look and recognizes it for what it is as I walk in to remove a ventilator to make more room for Daddy's recliner. They are spending the night in her room.

You see, they were about to go home with their 1st born bundle of joy and she decided that she needed to let them in on a secret before they left. She had a little 'blue' spell eating. We are all familiar with that. I know I am and not just from working in the NICU, Kai had an AV Canal and Coarct. So instead of home, she was whisked away to our NICU. Reading through her chart I realize that from birth and every record of an 'exam' there is noted slightly upslanted eyes, protruding tongue, low set ears, yet no one Dr or nurse said anything. As soon as she is brought to the NICU the same features are noted and then they immediately discuss with the parents the possibility of Trisomy 21 and they would like to do genetics testing.

As I am leaving the room I look at Mommy and see that far away look, not really looking at anything or even really there and I ask her, 'Mommy, are you OK?' 'Yes' she says.A few minutes later she comes out of the room and asks for the restroom. She is pointed to it and we go about our work. About 10 minutes later Daddy sticks his head out of the room and the nurse asks, 'Do you need something Daddy?''I was just checking on my wife...'

I am standing across from the restroom door. We realize its been a while and we rush to the door and knock...'Mommy? Are you OK?''Yes, yes...Im just splashing water on my face.'I know then that she is in there crying. She doesnt want her husband to know. We always have to be so strong, us women. Makes me remember back. She opens the door. The nurses still dont know what's really going on. They ask, 'Are you dizzy?''Oh yes...yes...a little...' she lookes up at me and I see the red rimmed eyes.They rush a chair over to her and sit her down in it and are about to attempt vital signs and such that you would do for a woman that just had a baby 3 days ago. I dont know what overcame me, Ive never been this bold before...but I just stepped in between all of them and her and put my hand on her shoulder.

I just started rambling. I didnt even tell her what I was talking about or anything. I told her It WILL be OK. It's not like you think. It's not what I thought. Its so much more than you can ever imagine, its a love deeper than you will ever know. I said, 'I can say this because I know, my son is 2 years old and he has Down syndrome.' I can honestly tell you that 6 months from now you will wonder why you were sitting in this very chair crying...and you may think Im a nut-job standing here telling you this, but you will see...I promise you. By now my voice is actually quavering and my eyes filling up and so were hers, but I can see that I broke through that cloud, that fog and was really talking to her.She said it was so hard because they were about to go home and now she is scared because the baby wont breathe right when she is feeding and she is afraid she will hurt her somehow.(At some point I notice all the nurse had scattered away to leave me with her.)She said it doesnt matter, its harder not knowing what is causing this problem or that there may be no answer as to why she is having this issue. She said, she is already here, I already love her.

I kind of had to regain my professional composure at this point...because there is no 'diagnosis' yet. I told her not to get ahead of herself. They dont know anything yet and to just take it one day at a time. She will be the same baby today that she was the day she was born that she will be 10 days from now, whether she has 46 or 47 chromosomes. She.Is.The.Same. She wont be any different, but you will. But dont worry, there are hundrends, thousands of us out there and we stick together like you wouldnt believe. I told her she will never be alone in this if that is what is for their family. She asked some about Kai and I told her what a joy he is and that he did have OHS at 10 weeks old and has done beautifully. By now her tears were gone and she was smiling, her husband finally made his way curiously down to us. She said, 'Im fine, Im just talking with Julie here...'

I asked her if she was OK to get up and go back to her baby girl and she was. I told her that whatever the outcome, do all the same things you planned; breastfeed her: and it may take a while...lots of mommies with any baby can have difficulties; love her, show her off proudly, have the same hopes and dreams for her because ALL of that is still possible. I told her Good Luck and Congrats and off she went to her room.Last night was my last day there, so I asked another coworker that if her tests came back for Down syndrome to give her my name and she could find me here on FB, if she wanted.

I have always wanted to help people, thats why I chose the medical profession. But I always felt there was more, something deeper more passionate within me...I wanted to make a difference to someone. After I had Kai it became very apparent what my purpose and passion is, but its a delicate process. Its difficult to find that balance of showing others, including the parents, the joy and excitement of a baby with DS and not disregard the feelings of sorrow and loss that they are feeling as well. I am so thankful to have Kai in my life, he has opened my life up to a happiness I never knew existed.

Secret Society

Originally posted on FB on December 8, 2010

We were in Target today with Kai and Lilah and as we were heading to the checkout a buggy zoomed by me and the little girl in the seat had DS. I felt that instant joy and kinship we all feel when this happens. My husband was 50 feet in front of me with Kai in his basket, my calls to him unheard. Finally I shouted and he heard me. I rolled Lilah up next to him and told him, 'look look look, that little girl has DS!' We turned around and I saw something that absolutely made my day...there must have been 8-10 buggies FULL of kids, a couple in each basket and several women rounding them up, and as I looked from face to face, I saw beautiful almond shaped eyes on every single child. I felt like I hit some sort of jackpot or lottery. My husband and I looked at each other, grinning like we were crazy and kept turning and looking...almost ogling.One woman noticed us looking, and we just smiled and started to walk away. We didnt want to appear to be gawking. The excitement got the better of my husband and he busted a U-ie and we went right up to them and started talking to the lady who noticed us. We asked if they were a school or nursery? Yes, they were a daycare for children with Special Needs. About that time, Kai spun around in his basket, flashed his sparkly blues and his silly grin, letting them in on the 'secret' ~ that we were part of their club too. All the ladies faces melted instantly and they all wanted to touch him and know his age and name...They gave us the name of the school and another teacher looked at me and Lilah and said, we also accept typical children as well, with a knowing smile.We cant remember the name of the school, but we are moving next week anyway. But I have to say that it uplifted my spirits and lightened my heart in a way I cant even explain...all those beautiful children right in front of me when earlier that morning I was so sad about Millie. It just felt right.

Friday, March 4, 2011

Dont Forget the Little Things

Things are going well. Bear is 100% back to himself which makes Mommy and Daddy feel 100% better. I think someone gave him the dose of the Love Bug too. He is all over Mommy and Daddy lookin' for Love! He hasnt been this affectionate in such a long time, and it sure is nice.

I cant help but wonder if we arent whirling around like 2 tornadoes trying to make sense of all this paperwork and get things done that we have not been giving 100% to our bambinos. I hope that's not the case. But in the event that it is, I have vowed with my One Item a Day for Peter, that I Dont forget the Little Things with our Thing 1 and Thing 2. So, after I busted out the Yahoo calender of events including work, therapy, my Item a Day(which you can read about on Peter's adoption blog), I am including time for the kids, for my husband and myself...I know that if I dont do this, it will all fall to the wayside. I sometimes get tunnel vision when I am working on a project and I need to learn to not do this, especially now with my family in tow.

Ive already penciled in a day at the park and hopefully a day at the Zoo, if weather is permitting. We bought a year pass to the Zoo which pays for itself in one visit, and I intend on using it. Im trying to think of other things to do with the kids. I may check into the library and see when story time is.

I knew it was a problem when I turned in my work schedule and forgot to ask off for the Saturday for Lilah's first Birthday party! Doh! Luckily I was able to get it off with no problems, but still. If I am forgetting the things for my kiddos then I know Im not doing anything for myself, and I know that all spirals downhill quickly...so the buck stops here. We also have PJ and movie night scheduled with my Pearland group and Mom's night out(which will be great!). Now I have to finish planning Lilah's birthday party. Im thinking something small. I have found if the party is smaller, Mommy gets to enjoy herself and gets to be in some of the pictures.

Blogging is also one of those little things I have to NOT forget to do :) We are still trying to raise the rest of the money to get Peter home. I think the grand total is $16, 257, which only leaves about $3700 to go! I know we can do it. Sometimes I feel like I need a 2nd me, but that might scare my husband.

OH, and need lots of positive thoughts and vibes...Daddy-O has an interview today. We have kind of quit announcing interviews because as promising as they seem they just dont seem to work out, so its hard for us to get excited now. We kind of get excited on the inside and just wait and see. So if you all could get excited for us, that would be great! I will be forgoing some sleep today in the middle of the day, but its definately worth it.

Well, thats it for now. Hope everyone has a great day and is also following us on our adoption blog, which you can get to by clicking on the link at the top of this blog, right under the ultrasound picture of Kai.