If you get offended, get off your high horse :)

I came upon a blog today that is meant to mothers with a prenatal Down Syndrome Diagnosis, and I just loved it. My favorite quote was “It was as if we were both part of a secret sorority” (sippinglemonade.com) Its so true but I’ve never had the guts to say it loudly because of the sensitivity of people around me. It isn’t us stating that we are better or that you can never enter it. Destiny enrolls us in it. We just have a connection from understanding our fears & obstacles we must face. Of course every parent has them but they are not like ours. We are a sorority that many are SO afraid to enter because they are scientifically “abnormal” but what people don’t realize is that they bring just as much joy into lives as the scientifically “normal” ones (Don’t get offended with that! Its just sarcasm). Science can tell us what we are made of but not who we are. 

I just wanted to highlight that quote because I wanted to allow you into our little secret but it’s just like me not being in the club of mothers with typical children. It’s something I just don’t know about.

So when a mother of a special needs child says that her fears and joys are different, she is being truthful and not trying to hurt your feelings. People expect us to be ok with their ignorance toward our kids, sometimes I wish I could be just as ignorant with them, but I try to be the bigger person because I know WHO my daughter is. Someones ignorant statement isn’t going to change how much I love my child and how much she’ll love me. We are thick as theives 😉

 

Sorry for the title but I get tired of people that get offended just because I comment on how great I think my daughter is. Yes she has special needs but I can think the world of her just as you can think the world of yours!!!!! 

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Battling fear

One thing I really think is great about blogging is the fact that I can write my personal feelings and thoughts about my life with my baby girl. I will say this though, I am not one to share my personal battles or fears that I have but today I feel like I must. So I will. I’ve been battling this for 2 months now and I have got to get it out, so I will vent.I will start with the one thing that has put me in this position.

I took Remi to get a hearing test at the Children’s Hospital in Dallas sometime in January. There wasn’t a reason to believe Remi wasn’t hearing right, but because of the fact that she has down syndrome, it’s always requested. So we had ophthalmology and audiology scheduled for the same day. She passed her eye test with flying colors but she failed her hearing test. “No worries” said her doctor, “she seems to just have fluid in her ear”. As a mother you still worry no matter what so you can just imagine how nervous I was when her follow-up test came this past Monday. They tested her eardrums and there was no response to sound. They tested her hearing and she, again, failed but could hear louder noises. She is at “mild hearing loss”.

My fear?

Hearing those words come from the doctor’s mouth gave me an urge to cry. I didn’t know how to react other than to cry, but I am not one to cry in front of others and especially not in front of Remi. The pain from that experience took me back to the day I was told about Remi’s down syndrome. I sat their thinking to myself that this was not happening. That they had the wrong results. There was no way that this perfect little baby had a genetic disorder…… I finally began to cry after 2 minutes of disbelief that day. How were Ryan and I suppose to handle it all? How are we suppose to prepare ourselves for the list of illnesses that can befall on our baby just because of that extra chromosome? We went for test after test after test since that day and thankfully they all came out with good results. My thoughts were, “Ok. We are out of the woods and there is nothing else to worry about.” Boy was I wrong and so that brought more fear of the unknown. Just yesterday I was watching a movie about a girl that dies from cancer and her mom helped her plan her funeral. I cried. Not because the girl dies but because I was thinking how that’s a chance for us. To think that my Remi has a greater risk for cancer kills me so deeply. I don’t ever think about it but somehow, this hearing test has brought all my fears forwards.

So our next step is to see an ENT specialist, get tubes put in her ears, and pray that it’s just fluid in her ears. She goes back for retesting in 8 weeks so being strong for Remi and just doing all that I can for her is all I can do for now. I don’t want her to know that I’m all wacked up. She needs her mommy happy at all times so I will do so.

What “Remi turning one” taught us

Sometimes we forget how blessed we all really are especially with my mind. This brain has definitely not been the same since having my Remi. It took a woman at the clinique counter to make me analyze the significance of celebrating Remi turning one. Her story broke my heart….. She started by telling us about her two kids. One 9 the other 16. Then her eyes tear and her voice breaks as she tells us about her middle child. He was born with down syndrome but did not survive his first year of life. You could see the desire to have been able to celebrate every given year with her son. She just watched Remi play with my mom so joyful and happy. It broke my heart to see that pain but it was a way of God reminding me how thankful I should be everyday, not just because she is alive, but because she beat the statistics of having any of the listed “problems” she was tested for. I made her birthday celebration as a day to thank God for her one year of life. A day to celebrate how we made it through it all with God’s help. We wanted to thank Him for blessing us with her and even if she came with that extra chromosome that we had no clue what it was going to bring into our lives but we have realized that she is just our baby. We don’t always remember she has an extra chromosome. We go weeks without even realizing it! We are not afraid to say the word “down syndrome” in our family nor are we afraid or ashamed to show her off to the world. We show her off as a trophy like ANY child should be not matter if they have disabilities or not! They are all blessings and given to us for a greater purpose. 

It’s been a while

Being told your child has Down syndrome is nothing a mother EVER wants to hear. Especially a mother that is uneducated with the chromosome abnormality.

Remi is almost a year old and when I go back to that day I was told about her extra chromosome, tears slowly try to break through. Not from sadness but disappointment. Disappointment in myself for not understanding the true definition and disappointment in the pediatrician for allowing himself to say “I’m sorry”. He said it as if though my daughter had a deadly diagnoses. That she didn’t have a chance to live! I get angry at that phrase: I’m sorry….. If it were for me, I would go see that doctor just to politely punch him in the face. Nevertheless, I have to understand people like him. As much as I hate it, I have to deal with ignorance. Of course I changed doctors to a wonderful lady that adores Remi. All her doctors have a requirement to meet to be her doctor and I have come to understand that they are a great reason for Remi’s surprising accomplishments.

Ever sit there and just watched your child play with adornment? I’m sure most mothers have. I love to watch her every move. Not just because I love her entirely too much but because I love to see every LITTLE movement that brought her to reach those tiny milestones. The way she uses her little fingers to feel EVERYTHING to gain knowledge of that object. How she analyzes every toy and every object around her to figure out what to do. Even putting things in her mouth to help her understand what it is. To watch those small things turn into big accomplishments like, taking every ring off, one by one. Turning the pages of the book when that page has been read to the end. Trying not to knock down the tower I build for her but instead, taking it apart one by one. You see, I don’t pride myself for her newfound abilities. I don’t believe that because of me my daughter is showing off her brains. I’m proud of Remi because she is doing all of this by watching those around her. I believe EVERY child learns at their own pace and we just have to celebrate there accomplishments and not allow what they have yet to accomplish change how proud we are of our little ones. Remi still has to learn to crawl because she’s stubborn like her momma and she is determined to walk but its a skill she has to accomplish to be released from therapy. Of course there are times I feel like I let my daughter down because of that but I remind myself that she will do it when she wants to. Lord knows she has the strength to do it she just isn’t interested. I can kill myself trying to get her to do it but its up to her. I’m only here for support.

My favorite part is holding her on my hip because she is such a big girl next to her mommy and she thinks she knows exactly what she’s doing! I am deathly afraid of her first birthday. How can I tell myself that my baby is growing up?!

This is why!

“I can do all things through Christ who strengthens me” Philippians 4:13. This is our family motto!

Remi is a couple of weeks shy of being 8 months. Last week she weighed in at 16lbs 7oz and 27 1/2 in long. She has came a long way from her birth weight of 5lbs 6oz and her length of 18 3/4in long. I see Remi now and I am in awe of how much she has grown and how much she does. I cry at every new skill she learns because I was told she would be SO behind from typical kids her age.  Being told that, I set my mind on helping her succeed those milestones. I couldn’t be more proud of my daughter for her determination and desire to learn. So far, she is reaching her milestones within the typical range, showing off her determination and making sure her doctors are in awe at her strength.

Being different is beautiful and something people fear but I’m determined to be different. To be able to see what others don’t because of fearing what others think or their reactions. To me, the odd opens up my curiosity and I will search until I figure it out. Remi is different and that’s what makes her perfect for me and my life. She makes everyday beautiful and shows me that not everything that we’re told about how our lives will be, is true. She brings surprises to my life and those are the moments that you will see tears in my eyes.

My favorite part of life with her is waking up to her, just staring at me. Waiting for me to open my eyes and when I do, she smiles. I could honestly say, she has done the impossible by making me a morning person because all I can do is smile ear to ear and give her tons of kisses.

I am absolutely proud to be her mother!

This is what you call an eye opener! Bam!!!

Wow! My eyes have been completely opened! 

I have wondered why people with DS have to push through life, harder than typical people. Well, my question has been answered! If we would put weights on a baby the same age as my daughter, they would have a tough time doing what my daughter has accomplished. You see, Remi has low muscle tone, making it twice as hard to do what typical babies can do with less effort, hence the fact that typical babies reach milestones quicker. Sometimes, people with DS have learning disabilities so they have to work extra hard as well to fit in the rake that is expected. It’s like trying to write or read while looking through a mirror. 

My respect for the people with DS have raised even higher. They do all this extra work that we take for granted and yet 99% of the DS community are happy with their lives. They don’t sit in self pity and hate the fact that they have to work harder at life. Instead, they do it knowing that it’s a HUGE accomplishment for them. 

Ryan & I will happily celebrate every little accomplishment Remi does and we will push her to exceed in life, pass what science says she can accomplish. I believe in God, not science. I am very proud of my daughter for keeping up with the “normal” milestones without an occupational therapist (finally getting one this month!) but I will not be mad at her for falling behind a bit, because if I had low muscle tone, I wouldn’t be as determined as my little one. I will be here to cheer her on and I will stand behind her and in front of her to protect and encourage her in life.

My daughter is not “sick”

I hate it when there are people that see “down syndrome” as something bad or a sickness. I know it’s just a lack of education of DS and I should just brush it off, but sometimes things stick in the back of our minds.

 I had someone say to me, “I feel so bad when my child is sick and I can’t do anything about it, I can’t imagine how you must feel”. I was taken aback. My mind went into a scramble and I had no way to respond from the shock of hearing someone actually have the decency to say that to me. But because of the respect I have to who that person is in my life, I just changed the subject.  If it were anyone else, I would have something, not so nice, to say.

My daughter is in no way “sick”! She doesn’t have a disease, a cold, a heart defect, or any type of health problem just an extra chromosome. She’s is a brilliant & vibrant little girl that tries to please whoever she meets. If you smile, she smiles back with a full fledged face smile.  If you’re sad, she’ll stare at you until you give her a smile, which again, she will return a warm smile. Because of her, I am strong, even stronger than before. Her diagnosis may have thrown me down but her love quickly built me up. I also hate it when people think that her personality is because of her syndrome. Seriously?! If that was a fact, then there would be a utopia of “typical” people in this world. My child’s calm personality and lack of so much whining and crying isn’t because she has DS, it’s because I’ve gotten her figured out. If I don’t do what she wants, she throws a HUGE fit so don’t use my daughter’s syndrome as an excuse to think that that’s what makes her who she is, because it doesn’t nor will I ever let it define her. 

Remi is loved and wanted by her daddy & I. If you could just see the happiness she has brought to our home and the closeness in our marriage, you would see how I wouldn’t want her any other way. We don’t have a perfect life, nor will I act as if we do, but Remi has definitely made our life better. She has literally raised the bar for her future siblings and we just can’t wait to see her grow. She is, of course, our perfect little angel :))

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Aside

My first babies

There are still days I think about my first little ones. I think about what they would look like, how old they would be, if they were boys or girls, etc…..scientifically, they weren’t even considered “babies” but instead “fetuses”. To me, i still count them as my first babies. I held them in the palm of my hand on December 11, 2010. That image goes through my mind and tears just run down my cheeks. I remember that severe pain and every detail of that day, Boy did I hate God after that day. I couldn’t understand how He would allow those babies to be conceived (I was on a birth control) and then take them from me. Those 8 months after were full of anger and pain. I specifically remember telling God that I didn’t care if there was something wrong with them, I would have loved them like any mother would!

Ryan was the only one that understood the pain. He was the one that carried me into the hospital, he stood next to me while I screamed from the physical pain, he cried with me when they said neither of the “fetuses” made it, he held my hand as they scraped me, he never blamed me for it. He never left my side. We suffered that day together and we’d wake up suffering everyday. It was so hard on us. To many, those babies shouldn’t have hurt, but they did. They broke us down and we could do nothing but move forward. But that day did create a strong bond because we knew we had a pair of angels watching over us.

While we were pregnant of Remi, Ryan and I began talking about the twins without crying with pain but instead with happiness. We’d tell each other how they are probably taking care of Remi in my belly and they knew exactly who she was already. How jealous we were that they had probably already met Remi and we had to wait. Ask us any day how many kids we have and we will say 3. One here and 2 waiting for us.

I hate it when Remi’s doctors ask me how many pregnancies then ask how many are alive. It feels like a slap to my face although I know they have to ask for medical purposes.

God must have wanted to test me on my statement on loving my children no matter if they weren’t considered “normal” in this world but I’m more than grateful to Him for that extra chromosome in Remi. I’m thankful He allowed me to experience being a mother especially to a very lovable little girl.  Ryan & I wouldn’t trade this experience for anything.

Blessed and thankful

As I straightened Remi’s room tonight, I realized something…. Her room is an average size room but i could probably only take 6 steps in that room. The reason?

SHE HAS SO MUCH STUFF!!!!

I go to Ryan && I ask him if he has realized how blessed Remi is. Being my parents first grandchild and my in laws first grand daughter (we have 2 beautiful nephews on that side but no girls), it has it’s perks. She has also blinded ryan with those eyes of hers, that he believes she needs everything && I have God to thank for it all. He just keeps giving and I have yet to know why He does.

Not only are our families the ones that encourage us and help build our strength for the road ahead, but we also have friends and acquaintances that we have been blessed to have part in our journey. Some new, some old && hopefully more to come. You all have blessed us with your support and I just wanted to take the time to let y’all know how great of an impact y’all have been to our lives.

On a different note,……. I absolutely hate this search for an ot (occupational therapist)!!! I have been searching for 5 weeks now and no luck! Really didn’t want to have to make the drive to Dallas every week but it seems as though that’s the way to go. Many prayers for us to finally find one.

A scrambled thought

“To every thing there is a season, and a time to every purpose under the heaven” (Ecclesiastes 3:1 KJV)

This scripture has played over and over in my head the past few days. I have used my high school/college taught skills to examine this phrase from every angle && boy is it just a scramble up there.

When did this world become a place where we rush to get things done as if there is no tomorrow? We worry about tomorrows problems or yesterday’s situations. I struggle with this everyday. I think too much about how our future is gonna be. I worry about situations in the past and rerun it in my head. I literally wear myself down.

So I have tried putting this into practice.

• Instead of being so OCD about my house, I have learned that not everything will be done in one day without sacrificing other things. In this case, it was spending time with Remi. So I have started to let the OCD run wild while she is asleep but shut it off as soon as she’s awake.
• when it’s play time with Remi, I try not to spend too much time worrying about the things she can’t do && straining to teach it to her, but instead thank God for those things she can. God has His time && has my daughters pace for this life in His hands.
• last but not least, I have learned to not worry about what I could or should not have done in the past and just enjoy today. Let go of those mistake and just take in what I have learned by them to make me wiser for the future.

This may seem like a minor change in my life, but it’s learning to trust God with His timing of my life. I want my daughter to know that God has a purpose for giving her that extra chromosome and in His time He will clearly state it. But for now, we will roll with the punches and i will enjoy the beauty of her presence in my life. Every smile, every laugh, every look from those eyes are a way of God telling me “everything is going to be just fine!”.