I can not say it enough, but it is so important to remember that children with special needs are more like other children without special needs, than they are different! While children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them. Most children with Down syndrome have mild to moderate impairments. Some high school graduates with Down syndrome participate in post-secondary education and many adults with Down syndrome are capable of working in the community.
It is very important to stimulate, encourage, and educate children with Down syndrome from infancy. Programs for young children with special needs are offered in many communities. Early intervention programs, including physical therapy, occupational therapy and speech therapy can be very helpful.
Like all children, children with Down syndrome greatly benefit from being able to learn and explore in a safe and supportive environment. Being included in family, community and preschool life will help a child with Down syndrome develop to his or her full potential. While social development and social learning are often quite good, development in other areas such as motor skills, speech and language are usually delayed. Many children with Down syndrome eventually reach most developmental milestones.
When it comes to Sophia, I have done very little differently in helping to teach her to be the best Sophia that she can be, then what I did with Jayden. Of course things take longer and we have to use a lot of repetition with her, but on those days when we are least expecting it, POW, she does exactly what we have been practicing for days, weeks or maybe even months, and that is when I know, all that hard work was worth it!!! I treat Sophia no differently than I treat Jayden. I expect the same things from Sophia that I expected from Jayden when she was at that same stage in her life. I know that Sophia is very capable of a lot of things, but I also know that her strong will and stubborness can interfere sometimes, and we just have to push all of that aside and make her understand that she does want to to do all of these wonderful things, because even though they seem hard, the outcome will be amazing! I will never "settle" when it comes to either one of my girls and their education. I know that both of my girls are very smart and they both have their own strengths and weaknesses. And together we will work on their weaknesses and continue to build on their strengths.
When I look at my girls, my heart melts. They are everything to me. I love them both more than anything else in this world. I have big dreams for my girls, not only as growing human beings, but as SISTERS. I dream that they will be close to each other and sit up late at night and share secrets in the dark. I dream that they will love each other more than they love anyone else, except their mama of course :) I dream that they will support each other in everything that the other one does and be each other's number one cheerleader. I dream that Jayden will fully understand one day that Sophia may need her more than other siblings need their brother or sister and that she will whole heartedly step up to the plate and be there for Sophia, in whatever way she needs her big sister.
My girls are still young, 2 and 5. The future, for either one of them, is very unclear right now. I look at their relationship now and somedays I think, "these girls are going to be great together! They are going to love one another and protect one another and stand up for each other, like nobody's business." But then, on a more frequent day I think, "oh my gosh, Jayden is going to bully Sophia more than the average Joe off the street. She isn't going to want her to be around her, she is going to get annoyed with her presence and just leave her in the dust to fend for herself!" Those days scare me. But again, my girls are only 2 and 5. Of course they get on each other's nerves. They pester one another like siblings are supposed to. They don't have to be there for one another right now, because that's what they have parents for, right?
Every once in a while, when Jayden doesn't know that I'm watching, I will catch her loving on Sophia. I will find her playing with her and sharing her most favorite toys with her little sister. I will listen to her explaining things to Sophia and teaching her how something works. I will see her pick up a toy for Sophia that she dropped or see her keeping a watchful eye on her little sis when we are around a group of kids, especially ones we don't know. I've heard her stand up to other children before when they have taken a toy away from Sophia, or when they get mad at Sophia for taking a toy away from them, Jayden always steps in as the voice of reason. Usually repeating something similiar to what I have to tell her over and over again when she too gets frustrated at her little sister for swiping her toys away from her. These are the moments when, my cup runneth over.
The point is, I worry about my girls and their future relationship. But most of us don't step up to the plate, unless we have to, especially at such a young age. And Jayden is being a kid right now, exactly like she should be. And Sophia is being a little sister right now, exactly like she should be. And Randy and I are being the parents right now, exactly like we should be. I think Jayden knows that as their parents we will take care of her and Sophia and protect them and love them and support them and right now that role isn't a top priority for her. Of course my girls love each other and I see it, daily. But I'm always looking at the bigger picture and sometimes I miss what is happening right in front of me.
Since Jayden was born I knew that Randy and I needed to get things in order, like have a will and life insurance policies and a plan in place should the unexpected happen, but time just kept passing by, and nothing ever got put in place. Then Sophia came and all of our concerns from before started becoming bigger concerns now. So again we discussed getting things in order, for both of our girls, and I am happy to say that TODAY we are completing the process of having a plan in place! Of course the idea of not being here for my girls forever, is heartbreaking. But the idea of not being here for my girls, and leaving a huge financial burden on someone else, is even more unsettling. So back in the spring we attended a free seminar at Indiana State University and got a lot of really good information about planning for our future and the girls' future, unique to each one. Then we followed up, one on one, with a financial planner and from there the plan was set into action. He matched us up with an attorney and together, the four of us, are putting our plans on paper and finalizing them!
One thing that I learned about after Sophia was born, was something called a Special Needs Trust. The basic purpose of a special needs trust, also known as a supplemental needs trust, is to provide benefits, by means of a trust, to a beneficiary who would otherwise lose eligibility for public assistance; SSI or Medicaid. Resources including funds in checking accounts, savings accounts, CD's, savings bonds and more, cannot total more than $1500 or the person will not be eligible for Medicaid and more than $2000 and the person cannot be eligible for SSI. Special Needs Trusts do not count as a resource. So in Sophia's case, when she turns 18, she will be eligible for Medicaid and SSI, as long as she doesn't have more than $1500 to her name. But with her trust in place, should anything ever happen to Randy and I, she will have a nest egg for her future that can be distributed out to her to help her live and pay expenses that aren't covered through government programs.
There are two types of Special Needs Trusts. The first Trust is an account funded by the parents or grandparents (the Donors) of a person receiving government benefits. Most Donors, people/person funding the trust, choose to fund the Trust account for their child or grandchild upon their death- either through their will, living trust, retirement account or life insurance proceeds. With this type of trust, typically, the account is annuitized over the course of the Beneficiary's lifetime, creating an annual spending projection. Setting an annual spending limit ensures that there will always be money in the Beneficiary's account throughout the course of his or her lifetime.
The second Trust is a Special Needs Trust which is set up by the person for whom the Trust is for, like Sophia setting up a Trust using her own money, and still being able to retain Medicaid and SSI benefits. People receiving an inheritance, a lump sum back-payment from social security or a personal injury settlement, have put their money into a Special Needs Trust rather than spend the money quickly just to stay eligible for government benefits. The intent for the this second Trust was not to be an investment vehicle so much as a temporary safe harbor for persons who have enough money to jeopardize public assistance benefits, but not nearly enough to make long-term plans. So for instance, if Sophia would get a lump sum of say $20,000 from somewhere, that could kick her off of both Medicaid and SSI, but with her doctor bills and living expenses, she would run through that money pretty fast. Now she would be subjected to reapplying for both Medicaid and SSI and have to wait to get back on, all because she had too much money in her name for a period of time. But with this trust, she can tuck that money away and use it over time without losing her Medicaid and SSI. With this Trust, any money left over after the Beneficiary passes away, goes back to the state. But with the first Trust, the one set up by Randy and I, that we plan on funding in our passing, that doesn't happen. Should Sophia pass and their still be money left in her Trust, it could be passed on to Jayden or any surviving children or grandchildren there may be.
Bottom line to all of this is, I've realized just how important it is to make sure that my girls will be taken care of both emotionally and financially. Randy and I have a wonderful support system, that would take our girls in and do whatever needed to be done to ensure that they were happy and healthy. BUT, as their parents, it's our responsibility to plan for their future. We don't want anyone to have to go broke over the fact that they are forced to take in one or two more children that they hadn't planned for. And even more importantly I've realized, with Sophia's needs being some what unique, it's very important that I always have an up to date "Letter of Intent," which not only lists Sophia's medical needs, doctors, likes/dislikes, but it also represents our wishes and desires for Sophia as her parents. So that should someone ever have to take over my job as her Mommy, they would know how to take care of her needs that may not be so "typical," and have an understanding of what Randy and I dream for her, for her future.
This has all been a learning process, which we still aren't 100% knowledgeable about, but pleased to say that we have a plan!
As most of you know Sophia has a feeding tube and always has. After Sophia was born, the doctors realized that she had a blockage where her stomach and her intestines meet, called a duodenal atresia. She had to have surgery to repair the blockage so that she could eat, and so that her food would have a place to go after it got into her tummy. Sophia wasn't able to eat at all for the first few days after she was born, there was no where for her food to go. It wasn't until she was about 4 days old that she was ever given anything, and because Sophia had such a poor suck/swallow she was given a NG tube (a tube that is inserted down the nose into the stomach) to get nutrition. And so our feeding tube journey began........
After about 4 months of dealing with the NG tube, and having to replace it down her nose every week and having all the pesky tape glued to her cute little face, we decided it was time for a g-tube. Plus, we knew that oral feedings were a LONG time away for us, and we were ready to get something more convenient. A gastrostomy tube, or G-tube, is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's a way to make sure that kids with trouble eating get the fluid and calories they need to grow. A gastrostomy is a common procedure that takes only about 30-45 minutes. After spending 1-2 days in the hospital, kids who have had a gastrostomy can get back to their normal activities fairly quickly after the incision has healed.
Not all children with Down syndrome have feeding tubes. There are a lot of children who eat very well and never have any feeding problems or at least never require a tube to help them get nutrition. But there are children, who DO NOT have Down syndrome who do need a feeding tube. Common conditions that might require a child to need a G-tube include: congenital (present from birth) abnormalities of the mouth, esophagus, stomach, or intestines; sucking and swallowing disorders, which are often related to prematurity, brain injury, developmental delay, or certain neuromuscular condtitions; failure to thrive, which is a general diagnosis that refers to a child's inability to gain weight and grow appropriately; or extreme difficulty taking medications. Gastric tubes typically last for several months or longer before needing to be replaced and replacing a G-tube is easily done by a parent or health care provider without any surgical procedures. If and when the doctor decides that a child is able to take in enough nutrition by mouth, the G-tube or button, may be removed. Removal takes only minutes and is usually done in the office by the doctor or nurse. Once the button, or G-tube, is out a small hole will remain. It should be kept clean and covered with gauze until it closes on it's own. The scar that remains will be small.
It's a little strange to think that I'm not so sure I would know exactly what to do if you gave me a baby and bottle and expected me to feed that baby! :) It's been a long time since I fed a baby with a bottle or gave a baby cereal or baby food. As normal as feeding a baby with a bottle is for the majority of mothers, it's normal for me to feed a baby using a feeding tube. Of course it wasn't always so normal. It took some adjusting, which we do a lot when it comes to Sophia's eating. She has reflux, which used to be HORRIBLE, but isn't bad at all anymore (knock on wood!) And Sophia has always struggled with the amount of formula she was given. She needed more calories to grow, but her little tummy just couldn't handle the volume of formula that we would try to give her. Which led to more feedings during the day or LONG feedings in order to try and keep her food down. I remember at the beginning when we would have to feed Sophia for 2 1/2 hours and then let her "rest" for 1/2 hour and then start another 2 1/2 hour feed all over again! It's hard to get things accomplished when your baby is eating ALL THE TIME! But she worked through all of that, and now she eats 5 times a day; breakfast, lunch, "snack", dinner, and at bedtime and each feed lasts 20 minutes. Of course it's hard to get all of her needed calories in for the day through her G-tube AND work on oral feedings, because realistically she just isn't that hungry to want to eat, but it's a work in progress. I used to hate this whole feeding tube thing. It was hard for me to understand there for a while why Sophia couldn't just eat! But it's just not that easy. Low tone, which is common in children with Down syndrome, can make a lot of things very difficult for my little Sophia, that comes so darn easy for other kids! Of course I still get frustrated at times when it comes to her feeding struggles and having that darn button, but there are many times where I am so grateful for her feeding tube and I know that ultimately that precious little tube is what has made it possible for Sophia to be here today!
Sophia has shown such improvement with feeding. Most people can't see, but as her mother I know that she is moving in the right direction and I am very confident that we will get to that day where we will be sitting in the waiting room of our surgical doctor's office and anxtiously awaiting our name to be called to have that button taken out, once and for all!
Approximately 40% of children with Down syndrome have congenital heart defects. Some of the heart defects require surgery, while others only require careful monitoring. Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. However, with appropriate medical care, most children and adults with Down syndrome can lead healthy lives.
The list of course goes on and on about health issues that are POSSIBLE in children and adults with Down syndrome, but these health issues are possible in any child or adult, regardless if they have an extra chromosome or not. What I can tell you in this post is my experience so far. Sophia was born with a gastrointesinal condition called a duodenal atresia. She had a blockage where her stomach connected with her intestines. So in order for things to pass through her stomach and out of her body, she had to have that blockage bipassed, which is exactly what happened, at 2 days old. Was it scary having to hand my baby over for surgery? HELL YES! But I was confident in our medical team and as scary as this was for me, it was a pretty common procedure, in our case at least. We also found out that Sophia had a congential heart defect at this time as well, that would need surgery to repair. Sophia had an AV Canal repair, which again is very common in children with Down syndrome, but scary as a mother. This was Sophia's third surgery, her second was having her feeding tube placed, and I was in knots prior to her heart surgery. I feared the worse but prayed for the best. Handing her over to her heart surgeon was very difficult. With any procedure, there are so many things that can go wrong, but usually don't. But when you are the parent of a child going into surgery, all you can think about is all of the things that could go wrong. Again, I was very confident in her medical team, and simply had to put my baby girl in God's hands and know that He was going to do what was best for her, and He did. He brought her back into our arms!
Sophia has also had some pulmonary issues, like sleep apnea, and had to be on monitors when she was younger and oxygen because of her heart defect. She has also had issues with feeding, which we work on daily and are positive that she will come around to a love of food, just in her own time! We are also currently approaching Sophia's fourth surgery this November. She will be having her tonsils and adenoids removed, which we hope will improve her quality of sleep and air flow.
Thinking back over Sophia's past and present health issues, can definitely seem daunting to a lot of people. I mean to this day, if I had to go through this stuff with Jayden tomorrow, I would be a complete basket case! Jayden has NEVER spent a day in the hospital, besides the day she was born. I wouldn't know how to handle her being on the other side of the healthy chart. And even with Sophia, it's still hard. I hate to think about her going through another surgery, no matter how routine it is. But this has been "normal" to us when it comes to Sophia. She has always been a frequent flyer at Riley Hospital for Children. She has had surgery to both help her thrive and grow and to save her life. She has been to specialists and our pediatrician more times than I can count. Do I worry about Sophia's health more than I worry about Jayden's health? Yes and no. Absolutely I worry about the health of both of my girls. I know that in an instant everything can change and Jayden could go from being a healthy 5 year old to the complete opposite. And as Sophia is growing up and getting out of that baby stage, her overall health is very good now. But with Sophia, there are more statistics that say she is more likely to have this problem or that problem, so I worry more about her in that regard. Throughout these past two years though, I have realized that all I can do is take one day at a time and cherish every thing in that one day. I can't worry about tomorrow or the distant future, because I can't change what is meant to be. But I can make the most of what I have, right here, right now. And that is two very beautiful, healthy little girls that are so full of life and love and happiness!
Randy and I have been together for 13 years, but today we celebrate 7 years of being married. It's crazy to think that I have loved this man for almost more than half my entire life. Everything in my life that has every truly meant anything to me, I have shared with this one person. He has been one of the few people that has stood by me through thick and thin. He has supported me in every aspect of the word. He has believed in me and in our relationship, even when I sometimes didn't. He is more to me than just my husband, or the father of my children, but he is my best friend. And I'm not sure that I can put into words just how special and amazing he is to me.
When Sophia was born, and we got the potential diagnosis, neither one of us truly understood what was happening in that exact moment of time. Things were happening so fast and I just remember waiting to hear the bad news. I heard that Sophia possibly had Down syndrome, but the energy in that delievery room made it seem like something tragic was about to happen. And that scared me more than anything. I kept feeling that there was something bigger that they weren't saying and I feared for my daughter, and our family. Randy NEVER waivered on his love for Sophia. I can't say for sure what he was feeling in that moment, hearing that his daughter may have Down syndrome, but I do know that he was there right by my side loving me and telling me that everything was going to be okay and never once have I ever heard him wish that things had turned out differently for our daughter. I could tell that from the first moment we both laid eyes on her, she was perfect, in both our eyes. I bring this up because I have read about husbands/fathers, who have left after hearing that their child had Down syndrome. I have read about husbands/fathers wanting nothing to do with their child, either short term or long term, after getting the diagnosis. But for Randy, it was the total opposite. He was in love from those first few moments and his love for her has done nothing but grow each and every day.
I feel so blessed to have Randy in my life. Don't get me wrong it's not roses and rainbows in our house every day, in fact it's usually a brewing thunderstorm :) but I wouldn't trade this man in for anything else in the world. I look forward to raising our children together, experiencing life together and growing old with this man right at my side. I love him more than words can express and am so happy to be his wife! Happy Anniversary Randy, I love you!
Because Down syndrome is also referred to as Trisomy 21, I decided to give you 21 reason why I love my sweet little Sophia.
1. I love the way she looks into my eyes and I swear sometimes that she is looking deep down into my soul with those baby blues.
2. I love her strength, her courage and her determination.
3. I love the way she wraps her arm around my neck when I am holding her, so we can be as close as possible.
4. I love the way she WANTS me, and the way she NEEDS me.
5. I love the way she waddles around the house, like a little penguin.
6. I love the way she loves people.
7. I love how curious she is about her surroundings.
8. I love her little feet and her teeny, tiny hands.
9. I love how she is growing up into a little girl.
10. I love how she knows EXACTLY what she wants.
11. I love her beautiful, long, locks of heaven, also known as her hair.
12. I love how she makes my heart melt every time I look into those big blue eyes.
13. I love the way she signs, "please," anytime she wants anything, and she expects to get whatever it is she is wanting, because after all she did say PLEASE!
14. I love the way that she looks up to her big sister and loves her unconditionally.
15. I love the way she has rocked my world.
16. I love the way she fights, as if her life depended on it, and sometimes her life did depend on how hard she fought.
17. I love how independent she wants to be.
18. I love how much she still lets me love her.
19. I love her infectious giggle.
20. I love how she is who she is.
21. I love how absolutely PERFECT she is!
I asked some of our closest family and friends to share with me how Sophia has changed their lives and their outlook on Down syndrome. Here is what some of them said.......
*** When I see Sophia, I see a very beautiful, special little granddaughter with a beautiful smile, beautiful blue eyes and beautiful blonde hair. Perfect in every way. Just as I see all my grandchildren who are special in every single way. I don't see an extra chromosome, I see a special child with special needs, as all my grandchildren, and children, have special needs. As all children have special needs. God gives us situations in life to build our character, not to destroy us. It is what we do with it that matters. It is an attitude, a choice, it is to strenghten us. Be happy, love life, love this little gifted "star" from God. Sophia has inspired me to be better at being myself. Accepting myself for my own challenges in life. Every time I think I can't do something, I think of Sophia and all the challenges she has gone through before the age of one, and I know I can do whatever I need to do. God sends us children to teach us how to be humble, how to accept ourselves for who we are and how not to judge. Life is a gift, and God does not make mistakes. Sophia is everything she is meant to be, and more. -Sophia's Nana
*** Sophia Grace changed my life forever on the day she was born. Growing up, there were several kids with Down syndrome that went to my school. All I knew about them was that they were in the Special Ed. classes and that they all had the same "look" about them. I know that it sounds unbelievably naive and cold, but I am being honest. I just didn't know any better. I had no idea that they may have been born with holes in their hearts that would require serious, open-heart surgeries to fix. I didn't know that many have stomach issues as well and that they sometimes need to eat via feeding tube. I didn't know that many people with Down syndrome have hearing problems and low muscle tone. All I knew about Down syndrome was what I could physically SEE with my eyes....the small stature and upward slanted eyes. What I couldn't SEE about those kids in my school was that many of their symptoms of their condition are treatable, that they are incredibly sweet, loving individuals, and that they are capable of leading amazing, so-called "normal" lives. I think that the best thing I've learned about Down syndrome is that the life expectancy has increased so dramatically since I was a kid. People with Down syndrome can now expect to live well into their sixties. This makes my heart so happy, because I know that Soph is going to be here with all of us for a very long time, and that she will get to have a life that is long, fulfilling, and packed with potential! Just like everyone else :) The only thing is, Sophia is not like everyone else. She has the biggest heart. And in the same ways I couldn't "see" all of the wonderful things about those other kids in school, Sophia can't "see" all of the negative things about us "normal" people. She is so blessed for that. And we are so blessed to have her in our lives!!!!! -Sophia's Aunt
*** We have learned alot about Down syndrome since Sophia was born. She has been through so much in her young life and has come out well. We love her dearly. We will be behind her all the way!
-Sophia's Great-Grandma and Great-Grandpa
*** I remember when Sophia was born, the word Down syndrome didn't worry me as much as the thought of a little girl having to endure so many surgeries. That broke my heart. I didn't know very much about Down syndrome. I knew that kids with Down syndrome would have different obstacles than other kids, but I did not understand the extent that those would be. Sophia has opened my eyes to some of the challenges (surgeries) that I didn't realize is pretty common with Down syndrome. Parents just want their kids to have a happy, healthy life. To undergo so many surgeries at an early age always scared me for Sophia. Through everything, she was always a trooper. It has been a blessing to see her grow and change into a little girl. It illustrates the fact that she is going to continue to grow and change and be a gift to society. She has helped me see this in all kids/people, that might have a medical condition of any sort. I can't assume anything based on looks. I need to look at the person. -Sophia's Uncle
*** Has it already been two years? It's hard to remember or imagine my life without her in it! The one thing that Sophia has taught me is unconditional love. No matter how bad a day I have had or how overwhelmed I feel, just one hug or kiss from Lofa can make me forget about all of it. This AMAZING little girl has had to endure more in her short two years of life then most do in a lifetime and she does it all with a smile on her face. She is inspiring in so many ways. When I think about Sophia I don't think of a little girl with Down syndrome, I think of a beautiful, smart, determined soul who makes me think anything is possible. I feel very blessed to have Sophia in my life and thank God for sending this gift to us.
*** I never knew much about Down syndrome until I met Sophia. I never knew about all the complications that came along with it. Sophia is the strongest, most special little girl I know. It is hard to imagine that someone so little has already been through so much. Looking at her, you would never know how many surgeries she has had, all you see when you look at her are her sweetest eyes, the prettiest smile, and how special she can make you feel. God gave Sophia to the most amazing family and they have all changed my life with their incredible strength. -Sophia's Friend
Sophia has touched so many lives already in her journey of life and I know that she will continue to inspire people in the years to come. Sophia truly is a blessing sent from God, and my family is extremely grateful to have been given this amazing little girl! Through all of the surgeries and hospital stays and doctor appointments and therapy sessions and struggles that we have gone through, I wouldn't trade one of those things for anything. All of these things have made us the family that we are today. Sophia has shown me so much strength and determination. She has shown me a love and an innocence that gets bigger and bigger each and every day. She has shown me that anything is possible, when you set your mind to it. And most of all, Sophia has shown me a new love for God. I have always been a believer and God has always been a part of my life, but since Sophia has come along I have felt a new connection with Him and how He truly does make ALL THINGS BEAUTIFUL! -Sophia's Mommy
99% of people with Down syndrome said they were happy with their lives.
97% of people with Down syndrome liked who they are.
99% of parents said they love their child with Down syndrome.
97% of brothers and sisters, ages 9-11, said they love their sibling with Down syndrome.
For most parents, siblings, and people with Down syndrome, the experience of Down syndrome is a positive one. Inaccurate, incomplete and occasionally offensive information about Down syndrome from healthcare providers can impact a mother's desicion greatly when it comes to having a baby with Down syndrome. Prenatal decisions about Down syndrome present profound and deeply personal challenges to expectant parents. But what expecting parents really need to know is the TRUTH, from REAL FAMILIES, that are living their lives with Down syndrome being a part of it. And not just living their lives, but LOVING their lives and being THANKFUL each and every day that they have been so BLESSED to have someone so AMAZING come into their lives!
As a parent I think that our biggest fear would have to be losing your child. I can't even begin to imagine that kind of pain. But on a smaller scale of things, I have fears about the future for both of my children, but they are fears that are unique to each of my two girls.
For Jayden, I fear that she may become a hoodlum and live a life of crime and be addicted to drugs. A little intense I know, but I do fear that somewhere along that path of middle school/high school she could possibly fall into the wrong crowd and wind up in a very dark place. I also fear that maybe she won't go to college and that she will settle for something easy and end up struggling all of her adult life. I fear that she may not find someone to share her life and her hopes and her dreams with. I fear that she could possibly be unhappy or worse yet, resent me or Sophia for all of the "special" attention that Sophia needed and Jayden didn't.
On the other hand, for Sophia, I fear the day I have to send her off to school. I fear that other kids will be mean to her. I fear that while they are being rude and hurtful, she will not understand their actions and will want to be their friend anyway. I fear that she may not be able to communicate with me, or other trusting adults, and therefore not be able to tell anyone when something bad has happened. I fear that her teachers will be mean to her, or impatient with her and her needs. I fear that she will not be given every opportunity because she will always be seen as a person with a disability first instead of a person with many abilities. I fear that people will always try to take advantage of her because she is so loving and trusting and compassionate. But over all, I fear that one day I will not be here to take care of her. I know that she is still so little, and of course I have to do so much for her still, but deep in my heart I feel like noone could ever take care of my precious Sophia the way I can. She needs ME. But what if I can't be here? Who will love her and give her hugs and kisses? Who will hold her little hand and snuggle her when she is sick or scared? Who will watch over her and protect her and keep her safe from all of the cruelty that surrounds our world? Who will take my place as her mother, for as long as she NEEDS someone to be her mother? It's a lot to ask of anyone to take your children should the unexpected ever happen, but to take your child that may need to live at home forever, that is a whole other ball game. I have always had a hard time with death and losing people, but since I had children of my own, the stakes become so. much. higher. I fear for both of my girls that they will fall apart from each other. I fear that Jayden will not want to watch over Sophia as they get older and that the sisterly bond that I always wanted for my girls to have, will be nothing but a dream.
I have these fears. I can't help it that I think the way I do or that I know that anything can happen in life, good and bad. Deep in my heart I know that Jayden is an amazing person who is capable of anything her little heart desires and she sets her mind to. I know that she is loving and compassionate and that she is protective of Sophia, she just hasn't really had to be yet, that's what I'm here for. I also know that there truly are a lot of loving, trusting, patient and compassionate people in this world, not everyone is bad and mean and cruel. I know that Sophia will do amazing things as well and will be a voice and a face to change peoples views on individuals with Down syndrome. My girls are AMAZING and with or without me their world will go on, together. I have to believe that.....but I still have my fears.
Having a child with intellectual/developmental delays is usually a given that they will be behind their peers when it comes to learning certain things and mastering those almighty milestones. From the beginning I've always been very much aware that Sophia would most likely develop the typical baby/toddler milestones later than what Jayden did for instance. I'm also very much aware that Sophia will need more time, more patience and more one on one assistance when it comes to learning new things. And I'm fine with that. I will help her learn, at her own pace, and we will rejoice every time she masters something new. I know that just because the two year old next to us is running and jumping and talking up a storm and doing puzzles, and Sophia isn't, I'm really okay with that. Don't get me wrong, I've had my moments here and there, where I saw a child that was Sophia's age, or younger, (ouch) and they were doing WAY more than what Sophia was doing and I caught myself thinking, "why can't Sophia do that! It's not fair!" But then I remember all of the AWESOME things that Sophia IS doing and I think, "you know what, who cares if she isn't running or jumping or talking or doing puzzles, she is doing so many other amazing things," and I remember that with time she too will be doing all of those things. When she is ready. Then I get online and I read about other triumps that other kids Sophia's age are doing and I start to feel like maybe as a mother I am failing her, because even though I know that with Sophia's diagnosis she is more likely to be behind her peers, these triumps are about kids Sophia's age who also have the same diagnosis. So if "Johnny" is running and jumping and talking and doing puzzles at two, and he has Down syndrome, then why can't Sophia? Then again I remember, Sophia is Sophia, not "Johnny". Sophia is her own person, who learns and grows and thrives on her own time. Just like ALL kids, she does things when SHE is ready. And just because Sophia has Down syndrome and "Johnny" does too, that doesn't mean that they will learn things at the same time, just like "typical" kids don't always learn things at the same time either.
"With a non-invasive prenatal test for Down syndrome being introduced and recommended for all pregnant women in a culture obsessed with misguided perfection, clearly the most critical issue facing the Down syndrome community is extinction of these precious individuals." - Kurt Kondrich
On a typical weekday, Sophia's day starts out the same as Jayden's, with an uninviting wake up call from me at 7:30 am. Then it's off to have breakfast, in her big girl chair up at the table with Jayden and me. Of course Sophia gets her breakfast through her feeding tube, but she is also offered real breakfast food, just like Jayden, and is encouraged to try it. She may play with it and get a taste or two in her mouth, but usually breakfast isn't too exciting. After that it's time to get dressed for the day, diaper change and a comfortable outfit to play in. Then we move into Jayden's room to get her dressed and ready for preschool. Sophia likes to brush hair, so we let her brush our hair and make us look perdy for the day :) On Mondays, Sophia's friend Karla comes over before school to play with Sophia in the morning, and Mommy gets a little peace and quiet! On Tuesdays, we both drop Jayden off at school, then come home and play for a bit, then Karla comes back for some more Sophia time. Wednesdays we have physical therapy in the mornings and Sophia gets her walking workout, hardcore! Which by the way, is paying off!!! We are going to have a full time walker any day now, I just know it!!!! Then Thursday mornings are all about Mommy and Sophia. We play and sing and dance and giggle till we just can't take it anymore! And Friday's are our free day! It's a day that consists of just me and my girls and we do whatever our little hearts desire that day. Then each day we have lunch, again at the table, together. Sophia is once again fed through her tube, but is also given an edible lunch to consume through her mouth. Lunch is more exciting and usually we get bites of food in her mouth, but still not enough to make a meal out of. After lunch we play! Outside, inside, barbies, blocks, it doesn't matter. We just play, play, play....till I wear her out! Then it's naptime for my little one. Sophia also gets another feed during naptime, just to keep her up on her caloric intake for the day, we need five tube feedings a day right now. After nap, it's more playtime for these three girls, while we wait for Daddy to come home from work. Then supper is the same as lunch and breakfast, except Daddy is home to eat with us, as a family, all four of us. After supper is more playtime, and usually a family walk around the neighborhood. Then bathtime, which the girls love, and bedtime, which Mommy loves! It's a peacful night usually for Miss Sophia, until her early bird wake up call to start the next day!
How much more "normal" can you get? Sophia sleeps, she eats, she plays, she laughs and engages 100% in her surroundings. Of course we have to throw in a trip or two now and again up to Riley for routine checkups and an occasional weight check at our local pediatrician, but those are all things that have slowed down for us TREMENDOUSLY in the past 12-18 months. The bottom line is, Sophia is as much a part of this family as anyone else. She does EVERYTHING that we do. She goes EVERYWHERE that we go. And that will never change.
PS: Sophia had her annual cardiology appointment today at Riley, and every thing looked FABULOUS! This girl continues to have a HEALTHY HEART!!!!
Like I've said before, the unknown can be scary, no matter what the unknown might be. But the unknown can also be the most amazing thing that you may ever do in your life. And unless you put yourself out there to explore the unknown, you may never know just how beautiful MY BABY and so many other babies just like her are. Check out part one of a four part series HERE.....
I remember when I got pregnant with Jayden and after a few visits to the OBGYN I was asked if I wanted to get a triple screening done. I knew essentially it would tell me if there was anything "wrong" with my baby, but I figured given my age and that I am relatively healthy, what was the point? And I wasn't sure if my insurance at the time would cover the testing, silly reason not to have a test done right, but really what "risk" would I have in having anything other than a very healthy baby? Plus, no matter what any test results came back saying, I was having a baby, my baby, period. So I opted not to do the testing, and had a wonderful pregnancy, gave birth to a beautiful, healthy baby girl on the due date that was picked for me and spent 2 days in the hospital, with my new daughter by my side and then went home to start our family.
So 2 years later when I found out I was pregnant again, I didn't even think twice about not having testing done. I was still young, 28 years old, and had had a wonderful first pregnancy, still in good health, and the bottom line was for me, I'm having this baby, my baby, and there is nothing any test can tell me to change my mind of that. So I went through this pregnancy, with no major problems, but this time around my body definitely felt different. I was more uncomfortable this time around, but I was working more and I already had a toddler under my feet 24/7. I also seemed a lot bigger sooner than the first time and ended up going into labor 6 weeks early, which scared me to death! I delivered my second baby girl, with no real problems. I got to hold her for a few minutes then shortly after she was taken to the nursery, or so I thought, she actually was taken to the NICU, I was soon informed that the neonatologist suspected that our baby girl had Down syndrome and she also had a blockage where her stomach and her intestines meet. We spent one night at the delivery hospital, Sophia was not at my side like Jayden was. She was in the NICU, where I only got to hold her once, then the next day she was taken to Riley Children's Hospital via ambulance and had her first surgery on day 2. Which is when we also found out about her heart defect and spent the next month in the hospital dealing with post surgery stuff, oxygen, jaundice, feeding tubes, sleep apnea and on and on and on........
There are two types of procedures available to pregnant women: screening tests and diagnostic tests. The screening tests estimate the risk of the baby having Down syndrome. Diagnostic tests tell whether or not the baby actually has Down syndrome. At this time the most commonly used screening test is "The Triple Screen." This is a combination of three tests that measure quantities of various substances in the blood. These tests are usually done between 15 and 20 weeks of gestation. Sonograms (ultrasounds) are usually performed in conjunction with other screenings. These can show some physical traits that are helpful in calculating the risk of Down syndrome. Screening tests do not accurately confirm the diagnosis of Down syndrome. In fact, false positives and false negatives frequently occur.
There are also three diagnostic tests that are currently available: amniocentesis is performed between 12 and 20 weeks gestation. During this procedure, a thin needle is inserted through the abdominal wall and a small sample of amniotic fluid is taken. The sample is analyzed for chromosomal anomalies. Chorionic Villus Sampling (CVS) is conducted between 8 and 12 weeks. It involves the collection of chorionic villus cell sample from the placenta either through insertion of a needle in the abdominal wall or through a catheter in the vagina. The chromosomes in the CVS are analyzed for deviations. And Percutaneous Umbilical Blood Sampling (PUBS) is performed after 20 weeks. For PUB sampling, fetal blood is taken from the umbilical cord using a needle inserted through the abdominal wall. The blood sample is examined for chromosome abnormalities. All three of the diagnostic tests are invasive tests which carry a risk of miscarriage.
But now, a new maternal blood test has the potential to reduce the number of women referred for invasive testing for Down syndrome by 98%. Maternal blood tests have only been able to detect homrone markers that may show an increased risk for Down syndrome, but now they know that the entire fetal genome is present in the mother's blood. With new sequencing technology, scientists can analyze millions of DNA fragments from each blood sample, looking for abnormalities of chromosome 21.
So what all of this means is that in the very near future, you will be able to go to your OBGYN and have a simple, non-invasive, blood test done and find out if your baby that you are carring has Down syndrome or not, with the success rate of this testing to be very accurate. Honestly, I'm not sure how I feel about this. I'm all for being prepared. I typically hate surprises and like to be in control and one step ahead of what is happening around me. BUT, this test could possible sway more women to terminate their pregnancy based on a positive test result for Down syndrome, since this testing can be done early on in the pregnancy and the results should be as accurate as getting an invasive test done, like the amniocentesis. I think that the word "Down syndrome" still has such a negative impact on a lot of people. It's a scary word for a lot of soon to be parents to hear. And when you know nothing about Down syndrome or anyone who sports that rockin' extra chromosome, I know that a lot of people could make a fast decison to just "get rid of their baby." The truth is, for me at least, Down syndrome has absolutely changed my life, for the better. Sophia is my baby girl with or without that extra chromosome. She is going to grow and thrive and do wonderful things with her life and influence the lives of so many around her. She is a rockstar and one extra chromosome doesn't change that one bit! Do I wish now that I would have had some pre-natal testing done? Absolutely not. If I did the non-invasive Triple Screening and I got a positive result, I would have worried myself an ulcer before I ever gave birth. The unknown and the "what ifs" are always scary. Adoption, which I am 100% for, was not a road I was even considering at this point in my life. I wanted a family. And abortion, is not even something I would ever consider, I am pro-life. Finding out if my baby had Down syndrome or not would not be worth the risk of losing my baby, with or without that extra chromosome, due to invasive testing. And now that I have a beautiful, wonderful, perfect daughter that does rock that something special, I know even more now that one extra chromosome, is not worth killing your baby over. Down syndrome is beautiful and I have proof of that!
The 2011 Buddy Walk, is over......BUT, it was a GREAT day!!!! We are so thankful to have such amazing people in our lives that love and support us the way they do. Not only do we have a great family support system, but a growing support system from some amazing friends, and for all of them, we are truly blessed! So, THANK YOU, to everyone who came out on Saturday and walked with us to celebrate Down syndrome and the beauty that comes from an extra chromosome. Also, another BIG THANK YOU, to everyone who continues to help support our fundraising efforts every year to give back to Down Syndrome Indiana, who does so much for the Down Syndrome community here in Indiana. Sophia's Stars ended up collecting $1607 to give back! And all of that, is because of YOU! From the bottom of our hearts, we love you all!!!!!