31 for 21: New Parent Advice

I was asked yesterday on Facebook by a friend "What piece of advice would 

you offer a new parent who just found out their child has Down syndrome 

now that you have been there done that?"

I would tell her to remember that her brand new beautiful baby is just that, a baby. He/She will need the same bonding time and nurturing as any other baby so really take that time and love on your new baby. There will be plenty of time to learn about Down Syndrome and what all comes along with it.. I remember always trying to look at my boys and figure out "what was Down Syndrome" about them, when all I needed to do was admire their beauty and love them unconditionally.

31 for 21: Our First Year Montage Revisited

Going back through some files I came across this tonight and thought I would share this on my blog tonight. I have lots of new followers who I thought might appreciate our first year cutie pies :)

Make a video - it's fun, easy and free!
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31 for 21 Day 31.. 21 Things about Down Syndrome

Well as the 31 for 21 Challenge comes to an end I wanted to share 21 different things about life with Down Syndrome that pertain to my life.

1. Down Syndrome is NOT something to say your sorry about to new parents. Remember that at the beginning the child is just an infant that will require the same needs as any other child, if there are not other medical needs.
2. Down Syndrome is also called Trisomy 21 because the 21st chromosome has 3 cells.
3. Down Syndrome used to be considered a curse to many, and today I truly believe its a blessing.
4. Down Syndrome can be scary. Anything that is new and uncertain is scary.
5. People with Down Syndrome are not "always happy". My guys get frustrated, goofy, sad, adventurous, and misbehave just like my typical children do.
6. If you ask my children what they think about having twin brothers with Down Syndrome, they will tell you they think they are pretty cool. They don't see the disability, they just see their brothers.
7. Quote from my daughter Tristin "how are they different?"
8. Quote from my daughter Camille "they are hard workers and always have something to do"
9. Therapies do not have to be a bad thing. Not only do they benefit your child but you too.
10. I have become a Down Syndrome stalker. I love looking at new babies or children and interacting with adults with Down Syndrome. They are beautiful people.
11. Your life will be forever changed for the better, and that's probably not what you would have thought in the beginning.
12. If your pregnant with a child with Down Syndrome and considering an abortion, please remember there is a waiting list for infants with Down Syndrome in the United States. They are valued people and in demand.
13. Down Syndrome is pronounced just like that..NOT Down's Syndrome.
14. Here's a tip to PLEASE remember: People First Language please. People with Down syndrome are people 1st. Instead of “a Down syndrome child,” or "the Downs twins" please say “a child/individual with Down syndrome.” Down syndrome does not define my children..it's just a part of who they are as a whole.
15. Finding support is a major thing to understand your rights and regulations as a parent of a special needs child. Be sure to find support either locally or online.
16. Identical twins with Down Syndrome is VERY rare, and if your reading this blog and know of someone please put them in touch with me. pookeymom@msn.com
17. The Arc is a great organization to help support you. Each state has on and many many counties have one. Here is mine: The Arc of Jefferson County
18. People with Down Syndrome are not always classified as Mentally Retarded. Just like typical people, there are different degrees of learning ability.
19. Some days I wonder if its really that they have to many genes or we don't have enough. What would the world be like if we all loved and lived as people with Down Syndrome do?
20. Its encouraging to me to know that some people with Down Syndrome drive cars, hold great jobs, they get married and have families, they attend college, and much much more.
21. I thank God each and every day for choosing me to be the mommy of two amazing boys both with Down Syndrome. What did I do in my life to have deserved such a blessing :)

Thank you for following along this month as I tried to bring some awareness to my readers about Down Syndrome. If you ever have a question, a comment, or need more information about Down Syndrome, please feel free to contact me. I'm always up for good conversation about a topic so near and dear to my heart.

31 for 21 Day 14... Down Syndrome Features

One thing that I have come to love more than anything are the features of people with Down Syndrome. I found this photo on the left when I googled Down Syndrome Features. I know that some may find that statement odd, but I absolutely love looking at people with Down Syndrome and admiring their beauty. The almond eyes, the smaller facial features, their beautiful smiles, their attractive personalities.... I could go on and on.

To clear up any misconception some may have, There is no degree of Down Syndrome. My boys do not have mild Down Syndrome because they have mild features. I hear that often, Oh they must not have it really bad because they don't look like they have Down Syndrome alot. Having Trisomy 21 does not determine your personality, your IQ, your future, your life choices. I know many people who's children are not qualifying for services because their children do not need it. I know many parents who have their child potty trained at two. I know many parents who's child was talking at 12 to 16 months of age just like the typical children are.





How could you not love these features??

Here is an Oldie but Goodie. See if you can find the boys in this video:

Make an on-line slideshow at www.OneTrueMedia.com

31 for 21 Day 11... Family

I just got word that my brother in law Jim just finished the Chicago Marathon. I am so excited for him and proud of his journey to get there. He injured his foot about three weeks ago and it was up in the air even just this week if he was going to be able to run the 26.2 miles or not. So this was an even bigger accomplishment for him to not only run that distance but to do it while in pain.

This brings me to the subject of FAMILY.

When I received the diagnosis for Caleb that he had Down Syndrome I was alone in the NICU with my sister in law Megan. She was one of the best people I could have wished to have been with when the news was delivered to me. She is often a girl of few words, but she gets her point across. She said It's no Big Deal, you can do this. And to her, I believe its truly no big deal. She has a cousin who is like a sister to her and who has a Developmental Disability of some sort. Her cousin is, I think 19, such a fun person to be around and yet still needs the scolding a four year old would need for doing something they know they shouldn't have done, she can be quite mischievous at times. Megan knows what her aunt has gone through, what the family has gone through, how her cousin has affected many peoples lives for the better. And therefore I trusted that it was No Big Deal.

I called my husband and he met me at home and I told him about the diagnosis. We cried briefly, more out of fear. Fear of the unknown, fear of how our lives were going to change, fear of what others would say, fear for our children, fear of the future. In response to the fear we dove right into research and some of that scared the tar out of us even more, but most of it did actually settled our minds a bit. That this was indeed No Big Deal.

I have to say that at first breaking the news to family was heart wrenching. Each member took the news a little different than the other. We had some family members who began crying instantly, we had some family members who said they were so sorry, we had some family members say we were good parents and we could handle anything God gave us, we had family members make us feel like this was going to be a terrible burden on us and what were we going to do... Yea, a very broad range of emotions we had to deal with along with the fact that we still had two very tiny babies in the NICU who were still needing alot of medical attention to keep them alive.

Aside from breaking the news of the diagnosis, my family was absolutely amazing. I was in the hospital for several days before the boys emergency c-section, and then stayed in a week after they were born, and then a very long 84 day NICU stay for Isaac in Pittsburgh. During all of this, Tom and I closed on a new home. My family cared for the three older children and they all pulled together and scheduled who would have the children when, who would be feeding them, getting them off to school, etc..etc..etc.. AND my mom and sisters pulled together and painted and wallpapered almost the entire house for me while the boys were in the NICU so that there would be no paint fumes to deal with when they're wee little bodies came home finally. AND my church family provided us with meals AND my Mothers of Multiples group provided us with meals AND the prayers we received were so comforting.

One of the best things about a Down Syndrome Diagnosis? Family. It pulled us together more than we could have thought. It made us realize what is important. It helped us appreciate that just being here for each other means more than a high IQ or a big pay check. It means that God does give us things at just the right moment for just the right reasons. And I know that there are many people who would not want to deal with what we do, but not having been put into the position as we were almost 4 years ago I may have thought and said the same thing. But today.. Today I thank God for his DOUBLE BLESSING on my family. We have all grown from these boys. I love my family.

What would you say is one of the Best things about a Down Syndrome Diagnosis??

31 for 21: Day Two "The Diagnosis"

I'm going to start my Down Syndrome Awareness blog by telling how we got the diagnosis and how I feel it should have been handled differently.

When any parent has a child they are so very excited about everything. We always hope for a healthy baby, for a safe delivery, and to live happily ever after. When I found out I was pregnant with twins, the excitement was doubled. I was so surprised, I NEVER thought I would have twins. That was just one of those things you see other people do or watch on a Baby Story and feel for those parents...LOL After the initial shock Tom and I were very excited.

I had a long complicated pregnancy. I had several ultrasounds done, including three Level 2 sonograms to make sure everything was ok with the babies. In one instance the perinatologist spent 10 to 15 minutes just trying to measure baby B's pinky and make sure it was straight. Boys looked good. Hearts were healthy, all organs looked great except baby B had one kidney dilated but that was nothing to worry about it should fix itself before he was even born. After finally getting the pinky measurement the words "There's no indication of Down Syndrome in either boy, they're healthy". Great!! One Less worry, now let's just get through this pregnancy.

My due date was December 15th. On October 13th a very good friend of my family died. My mom was going to keep the news from me in fear that it would upset me to badly, but I found out and I was really sad all night long. Woke up October 14th to a trickle going down my leg..uh oh. Off to hospital to see what it is. Ended up not being amniotic fluid but I was having contractions very steadily so they kept me. The next day doctors attempted to get them to stop and did not succeed, the next day they put me on magnesium sulfate....UGH, but it worked. October 17th, I was feeling well, contractions have just about stopped completely I was ready to go home. I ordered my lunch and was sitting with my sister and niece in my room and we were talking about me going home. It was a good day!

THEN, the Charge Nurse came running into my room as the lunch lady was delivering my lunch to me and told me not to take a single bite of that food!!! WHAT?? The sonogram that I had just had that morning showed that Baby B was in distress and they got poor readings for everything they were checking for so I was off to an emergency c-section.

Terrible c-secton, won't go into details, but they put me to sleep.

Fast forward 10 days. I was in the NICU with the boys sitting with my sister in law Megan. We were chatting about how tiny and cute they twins were. Caleb (Baby A) was 3lbs 3oz and Isaac (Baby B) was 2lbs 10oz, both were 15 1/2 inches long. The pediatrician came over to our pod and said he had the test results back on Caleb. Test Results? WHAT TEST RESULTS? "I'm sorry to inform you that your child has Down Syndrome." "At this time we cannot tell you how he may function in life or what other conditions he may have. We have several brochures for you to read and I'll have the nurses put something together for you. Do you have any questions for me?"

UM, no!! Can't you see the shock on my face, let me get a few breaths of air into my body so my brain can even function. Ok..Ok So Caleb has Down Syndrome. Does Isaac? "Well we don't know that yet. Because Isaac is so small the test requires so much blood we've decided to wait until the results of the placenta come back to determine if they are identical or fraternal. If they are identical they will both have it but we've never seen a case like that before so more than likely Isaac does not have it."

To back up the story and explain. When I had to have the emergency c-section it was due to Baby B, Isaac, not reading well on the sonogram. When he was born he had severe head trauma from being shoved up into my ribs. He literally had a heart shaped head coming out with the imprint of my ribs going from the top back of his head down to his chin. Due to this they did not suspect any Down Syndrome in the delivery room, just head trauma. Caleb however, they noticed some features of Down Syndrome and asked my husband if they could run some tests on him. At the time I was still heavily sedated and didn't hear any of the conversation. My darling husband, who was only trying to protect me, decided not to tell me this information because I had been through hell that week and then a terrible delivery. I do seriously thank him for that as I would have just worried for that first 10 days instead of enjoying them.

When we received the official word that Caleb had Down Syndrome we were not upset so much with the Down Syndrome, we were just nervous that we would not know how to do this and hoping that we could be the kind of parents that he would need to tend to his special needs. Neither Tom nor I had any experience or knowledge about Down Syndrome and it was scary. While we waited on the diagnosis for Isaac we kept discussing, what if's. What if they both have it? What if one does and one does not? Which way would we prefer it? How much did God think we could handle? How long did we have to wait? It was driving us crazy quite frankly.

Oct. 31st. Closed on our house...YUP!! We were buying a house and wanted to get it ready for our twins arrival in December and instead the twins came first and then the house right after they arrived. We went Trick Or Treating with older three kids and enjoyed our day bragging to everyone about our sweet little babies in the NICU.

November 1st. Twins seemed a little different today? Not eating well and having alot episodes of them not breathing? I went home knowing they were in the best care just to see the other children and have dinner with my family. I pumped and went in for my evening visit to deliver milk at 10pm and was met by a dear friend, Tina, who happened to be our NICU nurse. She said Isaac was having some trouble and they had called the life flight to ship him to Pittsburgh Children's....

November 2nd. Isaac and Caleb had both developed N.E.C. Because Isaac was the smaller of the twins he could not fight off the infection in his small bowels and had to have an operation. During this operation they drew blood to test for Down Syndrome and as they broke the news to us about his condition, they also said they were pretty sure he had Down Syndrome.

This was ALOT to take in, but we grew stronger in our faith in God, our love for our family and friends for their help and prayers, and we learned more than anything that we have no control in this life and to feel blessed for every day we're given.


Note to Doctors and Nurses:
I just wished that how we were given the news would have been done with more respect to us as parents, for the road we were about to travel, more respect for my children who may have a more difficult road but darnit they were both beautiful infant boys who needed the same attention and love as my other children did at the beginning, and more respect for the disability in general. Its not a bad thing that you have to be Sorry about. Instead Congratulate the new parents, tell them that you know several others who have done great things with their children and there are so many opportunities out there now that weren't here 20 years ago, Give HOPE instead of SORROW when you give a diagnosis. I can tell you from experience, I have been Doubly BLESSED and I would not want this any other way even if I could choose it myself now.