Tuesday, October 30, 2012
Friday, October 26, 2012
The 21st of November 2006 after dinner my water broke... but i wasn't having any contractions..... I thought maybe something was wrong... why am I not in labor? After Evan made me wait 30 minutes we were on our way to the hospital! After arriving at the hospital I was set up in a room and the waiting began....... 8pm till 630am the next day nothing happened..... not one contraction. She was moving a ton. she was "running from the heart monitor. which lead to an alarm going off every time it would loose her heart beat, by 3 am I was well train on how to reset the alarm and re ajust the monitor to pick her up again. 7 am on November 22 I was induced..... for 12 hrs and 19 mins I had contraction after contraction...... I started regretting wanting them to start! 7:19 pm Wednesday, November 22, 2006, (the day before Thanksgiving) we finally met our Baby girl. She was perfect. She had a ton of hair, she was small, and fragile. After the doctor laid her on my chest, a held her there a few minutes then a nurse came over to take her and weigh her..." 6lbs 13oz........... 21 inches long.....and "I'm sorry your baby has Down syndrome"! " REALLY???? I was so angry, this was a special moment..... this was the birth of my 1st child..... Isn't that the doctors job, to inform the parent if there is an "issue" anyway..... I told the doctor to give me my baby and get that nurse out of the room...... she left and we went back to being proud parents of a beautiful baby girl who happened to have Down Syndrome. Thursday was Thanksgiving, that was one of my favorite Thanksgivings... We ate Hospital Turkey in a small room with 12 people I knew and about 5 I didn't. ( Waiting Room). Friday afternoon I was discharged but Hannah wasn't!
She was "rushed" off to the NICU... Which would be our home for 3 more days! She was having an issue regulating her body tempature . Instead of 98.6 she would drop to 96 or 97 degrees, she was hooked up to a ton of monitors, there were about 10 cords attached to her, such a hard site to see..... I cried for about 20 mins uncontrollably , my husband cried, he never cry's, it broke his heart to see his baby girl like that! All we wanted was our baby girl to come home. So for the next 3 days we spent all day at the hospital, in the NICU with Hannah. I know there are a ton of family's that through so much more but at that moment it was the worst thing that could be happening! Monday November 27 @ 8pm we brought our Hannah home for the 1st time, the next 3 days were kind of rough, she peed everywhere 3 or 4 times and spit up on me about 5 or 6 times and wouldn't sleep unless I held her, but after those few days we learned to live with each other and thing were wonderful!!
Thursday, October 25, 2012
This post should have probably been one of the first I wrote, but I guess I was just going where my heart took me and it wasn't until now, that I felt as though I was able to "admit" how I felt way back then! (6 years ago! LOL)With that being said here is the very beginning of our journey!
At about 20 weeks, we learned we were going to have a baby girl.... the excitement was undecidable... all my life I wanted a baby girl. The lord had finally blessed me with one! Hannah was a blessing from the beginning, I had some medical issues when I was younger and I was told I might not be able to have children, and if I did get pregnant it may be a high risk pregnancy, so when I got pregnant so quickly after stopping my birth control, (about 8 months) we were shocked... and so was my doctor. I was at risk for an ectopic pregnancy so I had my 1st ultrasound at 8 weeks she looked really good ,she was sitting in the right spot so the concern was gone and we went on as "normal" . I loved being pregnant, I felt good, I wasn't sick at all, I was happy and feeling very blessed.
About 26 weeks in to the pregnancy I had a route blood test. They were testing for the probability of Spina Bifia and Down Syndrome. It didn't seem to be a big deal since there was no history in my family and I was on 29! Well about 3 days after the draw I received a call from the doctors office ... " Mrs Johnson, the doctor needs to see you and your husband as soon as possible are you free today or tomorrow?" those word echoed in my mind for months, maybe even a year. That was the day I learn I had a
1 in 45 chance my baby girl would have Down Syndrome...... " Down Syndrome? What is that? Why? How does it happen?" Mrs Johnson we are able to do a test of fluid too see for sure if the baby has it, but you could loose her." Or if you want, you still have about a month if you want to "get rid" of "IT"!!!! REALLY?? After all I went through medically you ask me if I want to "get rid" of "IT"! At this point in the visit I didn't know if I was more angry with the doctor for suggesting I get rid of "it" or that she MIGHT have DS...... I cried for days, I asked God why we were going through this, why would he allow this to happen... What did I do to deserve this? I was sucked in to the same mind set as almost all of the medical field. Down syndrome was the end of the world.... yes I will have a baby, but she will be sick , she will never learn, she will have no quality of life, she would never talk, never walk, she would never go to prom, she wouldn't be a cheerleader, or play sport... she will be a burden. A disabled person who needed me to take care of her forever. So then I prayed, I thanked God for this precious baby girl , I prayed for wisdom, I prayed for strength! Then I started reading.
I Googled "Down Syndrome Babies" Some of the web pages made
me cry.... some scared me. These babies have heart defect....low mussel tone..mentally retarded....non-verbal....non mobile , very sick! Then I Googled Down Syndrome Blogs. I saw picture of babies with DS who melted my heart... stories of great successes ... parent so humbled by the lessons they learned from their little ones. It wasn't all bad. I also found an essay,written in 1987 by Emily Kingsley,
it really made me understand I wasn't the only person who had these feeling, the poem is called "Welcome to Holland".I then found hope.
I was ready.
As my pregnancy processed the amount of ultrasounds was unbelievable..... there was no guarantee she would even have Down syndrome but they wanted to make sure she was ok...... They never found anything to indicate she would be a "Downs baby"( their words, not mine). So I became less scared of the possibly.
As my due date grew closer and closer I began to have a feeling she would in fact have Down Syndrome. I have no idea what it was but my heart told me she did! I embraced the possibles ....I came to peace with the news..... Regardless she was my baby girl, my blessing, my Hannah!!!! I would love forever and always, I would learn as she learned, I would do anything I had to do to make sure she was as "normal" as she possible be. I would be her mommy no matter what! I was ready..... I had no idea what to except but I was given a gift.. it was my job to take care of her! I love you to the moon and back , always and forever!!!!
Tuesday, October 23, 2012
Hannah has been in Cheerleading since February 2012, We are totally blessed that the lord opened this door for Hanna
h and brought a complete stranger into our lives and give her an opportunity she might not otherwise have had. It is soo special to me for this person to fall in love with my beautiful little girl and wanted her to be part of something special, regardless of the DS. That stranger is now our dear friend, Coach Shana. An awesome women who knows Hannah pretty well and understands how she thinks! Hannah and Cheer have a love, hate relationship...... she LOVES to go to the gym, and she LOVES to do the tricks she learns but all that other stuff (like cheering) she could do with out! Hannah knows a lot, she know almost all the motions.... she even knows the counts! She knows how to do a front roll, donkey kicks, knee stands and the list goes on. Hannah doesn't always work like the other kids, she has her own way...... she watches and then she does it a few weeks later, but Coach Shana is ok with that! That is one of the many reason we love her soo much! Hannah has a ton of fun at cheer... I have some pictures from practices in the last 8 months that i will share... and the crown "gem" so to speak will be tonight practice... we arrived about 20 mins before practice started and she had time for a quick game of hide and seek with Coaches daughter....... it was and eventful practice to say the least.
Friday, October 19, 2012
With all the issues we are having with behavior, and all the stress that comes with raising any child, typical or special needs, you have to embrace the positive moments, the moments that melt your heart. That moment when they do something so sweet it brings tears to your eyes, or that moment they have a “good idea” that isn't so good but it make you laugh. The moment they finally accomplishes that one thing they has been trying to do for days and the pride shows on their face, or the moment you walk in the bed room and see what a mess they made but they look up at you with sweet eyes, and say “Hi Mommy” Welcome to my room”!! That moment they break out in a funky dance that you just have to video, or the moment they just wants to cuddle. That moment they say “I love you mommy”. Watching them climbing, sliding and swinging at the park, Just seeing the joy on their face as they play. Watching then jump and swim in the pool. The moments of pure joy are what we need to embrace and cherish! Hannah is a very loving, sweet, caring, honest, fun, smart little lady. She has a lot to offer this world and our mission is to help her be the best she can be.
Tuesday, October 16, 2012
For those of u who know me.. know last years school experiences was far from pleasant. Hannah was in a blended VPK class with 17 other children in a portable... we quickly found out that was not the best environment for her, she was having a very difficult time keep her hands to her self. She would not participate in class room activities and was listed as " off task" 90% of the time. I had countless meeting with the teacher but things did not change. In my eyes she didn't want to understand Hannah may have a different way of learning and understanding. So she spent a lot of time in "time out" which didn't work.(still doesn't).
Last year was just a waste.....
But this year I was hopefully optimistic things would be different,better,less stressful... we placed her in an IVE (individualized varying exceptionallities) class with 10 other kids, all with some kind of special need. A small safe class that wasn't to over whelming. After the "adjustment " period ( the 1st 2 weeks of school) we felt as though we would have a better year. The hitting and kicking would stop. She would be more willing to be involved , stay out from under the tables , and enjoy each day packed full of learning. We hoped the social skills would start to emerge, and she would understand how to be a good friend. In the last 2 months we have not done so well. Things almost feel like they are getting worse! I feel as though I made a bad decision for her.... I'm her mom, I'm suppose to help her grow, not make it more difficult. As a parent it's devastating, I know there are worst things but right now this is pretty big. You get that feeling as though you are failing your child. I ask my self a million questions... Is she unhappy? Is she getting sick? Does she feel intimidated? Can she just not express her feelings? Maybe its because her communication isn't 100%? Maybe last year was more damaging than we thought? What if I would have been a stay at home mom? What could have I done differently? Maybe I am doing something wrong? Maybe this, maybe that. The list goes on and on.
The only difference this year is her teacher is willing to ask for help. She has arranged the behavior specialist and social worker to draft a plan, set up meeting with us and the school so we are able to all approach the issues in the same way so Hannah will understand and have the same behavior modification plan at school and home. She is willing to listen and she wants to make it better. She want to help us solve the issue(s). But right now there doesn't seem to be an answer..... I know some people say its a stage but is it, or something more?
Saturday, October 13, 2012
Our Tampa Bay Buddy walk was today and it was an amazing day... We are so blessed to have such a wonderful supportive group of friends. We had a ton of fun, there were bounce houses, face painting, food, games and meeting new friends. I think the best part of the Buddy walk is meeting the new people, ya know you connect on Facebook and talk for months, but to finally meet in person is great. We had over 1200 people attend, and there were 200 people there today with Down syndrome, the oldest was a man age 50.. so amazing.... and the youngest was 4 months old. Such a wonderful thing to celebrate. Hannah's team... "Hannah All Stars" won a trophy for the most people on a team... we had 54 people walk for my Hannah!!! So awesome!!!! Here are a few picture from our day!