Let’s All Learn Something New

It has taken me a while to put my thoughts together for this particular post. I guess because I wanted to gather all my emotions and have the capability of putting them into words. (I promise it won’t be too sappy ๐Ÿ˜œ)

I have recently fallen into some situations that have made me realize that I am very oblivious to some things. Mostly, to the fact that many people around us do not know much about Down syndrome. Hey, sometimes I forget what all comes with Down syndrome because I treat my Remi like she is a typical child most of the time. Which I am reminding myself, lately, that it isn’t a correct way of raising her. (More on that later on this post) I want to encourage family, friends, and just anyone to read on the basics of Down Syndrome. In all honesty, reading up on any disability would enhance anyone’s empathy level and knowledge on how to approach a family or a person with a certain disability. Here is a link to an informative page about Down syndrome:  https://ghr.nlm.nih.gov/condition/down-syndrome

If you get the chance to read through that linked page,  you will be able to understand why I shouldn’t “treat” Remi like I would Jax. I would be doing her an injustice by doing so. Why, you ask? Here is a scenario: if she was acting out because she was trying to “say” something to me but I can’t understand her, would it be right for me to be stern with her? It’s not her fault she cannot speak clearly nor say some words. I see that “want” in her eyes. She soooo desperately wants to talk and keep a conversation with us but she can’t…. this is one of the hardest parts for me. Jax is 1 1/2 and he speaks more clearly than Remi but he has the muscle tone for it. 

One of our doctors has a grandson with Down syndrome. He made a comment to me that only those that have the experience of caring for one of these beautiful children, would understand. I was struggling with Remi staying in one place and not run the doctor over with our stroller. He asked, “It’s hard, isn’t it?” I asked “what do you mean?” His comment was this; “It’s hard to know when to discipline them because it’s hard to know when they understand you or not.” So so so true!!!! 

This brings me to my last thought. I honestly struggle with trusting anyone to watch my kids. Even MORE so for Remi. I have this huge fear that seems to be coming true the older she gets. People whom do not understand her and how Down syndrome affects who she is will want to see and treat her like they would a typical kid. I hope that with reading everything on this post you can see how that can be frightening. I’ve had some of these experiences lately and it has hurt my heart like nothing else in life. I don’t want to get too into this last thought because it brings out a lot of emotions including anger, sadness, pain, and the feeling of letting her down as a mom. Underneath my daughters frustration and her lack of understanding some things is a beautiful little girl. She is a grandpa’s girl and a grandma’s side kick. She gives her momma hugs out of no where when she sees her momma sad. She gets her daddy mad but knows how to win him over the next second. She loves to mess with her brother but will fight for him when someone tells her they are taking her brother home with them. She loves to get people’s approval and strives to make us proud. I’m more patient. I’m more understanding of ANY mother. I don’t judge those mother at the store when their child is throwing a tantrum or they are half dressed. I have learned that being a parent to any child is hard but loving them makes it so worth it. What more can ask from this little girl?! 

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Frustrations

You know, it never fails for people to have their opinions about someone’s life. I don’t know what it is about me that people feel the need to ask me sooooo many questions about my parenting decisions. Would they prefer for me to not love my children so much or to not want so much better and greater for them in life? Is it just their envy for their lack of  capabilities to be able to do it as well? I don’t know but my patience with people is wearing thin. I have tried hard to stay calm & give them a short response that shows I am not into making a defense speech for doing what I do. Wondering what kind of parenting questions I’ve been receiving lately? Here’s a few:

  • Why do you homeschool?
  • Why do the kids have so much clothes? They’ll grow out of it fast anyway? 
  • Why such a “big” party for them if they won’t remember it? 
  • Why don’t you let them be around drinking and cussing? That’s the world now-a-days?

Why does any of that pertain to anyone else but me and Ryan? I’m not going around asking other parents, “why do you public school?” or “Why is it that your kids don’t have clean clothes on today?”. That’s literally none of my business. These questions are like asking me “why do you love your kids so excessively?”. Maybe I should comeback with,  “Why don’t you love your kids enough?”. I am, by NO MEANS, a perfect parent. I feel like I fail my children everyday and that I don’t do enough as a mother for them. This world is how it is, but I will not, willingly, put my child in an unhealthy place just to make others happy. If I have the capability of keeping my child from a greater chance of being harmed, dang it I will!

 With homeschooling, I knew since I was a little girl that I wanted to homeschool my kids. It was a dream that I am fulfilling. According to studies everywhere, HOMESCHOOLERS ARE OUT DOING THEIR PUBLIC SCHOOL COUNTERPARTS. Want a link to a few studies, message me. I’ll send you that info. 

With the clothes, I just have an addiction to cute clothes. It’s like dressing your dolls and Barbies but now it’s real life ๐Ÿ’๐Ÿป(we give them to people that need them when they outgrow them so it’s a winning situation)๐Ÿ‘Œ๐Ÿผ 

And their parties were and are, by no means, big. It’s literally just food and cake with some decorations. Jax & Remi may not remember it in the future, but to me, being able to celebrate a life that was thought by doctors wouldn’t make it past the 2nd day, is something to celebrate. I’d make a parade for both my kids if I had the means for it. I had 22 years to be selfish. Three of those years, it was all about Ryan and I. We will have the rest of our life’s to love each other and grow that love and for now, the kids take over our day life, but once they are asleep, it’s our time to catch up with each other. We don’t need to go out for a date all the time. We make our own dates at home. Stuffing our faces and watching something interesting ๐Ÿ™Š  Now, I only have my children until they grow up and get married (more like when they start dating) to have their full love and nurture them without protest. One day they will get married and be out of my house. They will no longer be our responsibility to take them with us everywhere we go or to feed them and take care of them. I want to enjoy that and never look back to think “I didn’t spend enough time with them” when it’s too late. 

My whole point is, your opinions on parenting should just be that; YOUR OPINIONS. If no one asked for it, don’t say it because you might be that last straw and you won’t like the comeback. Believe me, I don’t agree with ALOT of people’s parenting, but if the kids are happy and healthy, I don’t need to stick my nose where it doesn’t belong! 
The End ๐Ÿ˜Ž

Jaxton

I finally have some quiet time to myself since Ryan took Remi to our nephews 1st birthday (which Jax & I missed ๐Ÿ˜ข) and Jax is sleeping. I love these little moments of time to myself but I wanted to have our experience written down before the rawness of it goes away. It would be great for him to read this when he’s older and I don’t want to forget a single details. When we go through something so traumatizing, we tend to put certain details in the back burner and try to forget it. Well, at least I’m that way. 

Where to start…….. Hmmm…. I guess I’ll start with being put on complete bed rest. That was a hard week or so. I went to one of my regular, bi-weekly OB appointments on a Thursday and for some stinkin’ reason my blood pressure was super high. Needless to say, a whole lot of testing and monitoring happened from then on. I was finally admitted in the hospital a whole week later where they realized that it was affecting my liver. Friday morning, my doctor made the decision to take Jax so he scheduled the c-section for that afternoon. Those that have been around me enough know that I was planning on a VBAC so I was disappointed but my plans aren’t always Gods plan. I was emotional from the beginning of this mess. It was a flashback to my pregnancy with Remi. As much as I hate to admit it, I broke down in front of my nurses every time they gave me some kind of news and that didn’t stop until after Jax was discharged.

Friday morning, we were transferred to L&D where I was hooked up to an IV and had magnesium “dumped” in my system in a 30 minute time frame. If any of my nurse friends read this, you will know how horrible that process is. For those that don’t know the process, they pretty much push a certain amount of magnesium into your body within that time frame and it makes you feel HORRIBLE! I felt flushed and I wanted to vomit. I was ready to pull that needle out of my wrist! (The magnesium was to prevent sezuires) 

At 2 pm, Ryan and I were talked through how the process would go. By 2:30, I started having a reaction to the magnesium which made my blood pressure go to dangerously low levels. Thankfully, the anesthesiologist was on hand and gave me adrenaline through the IV. At 3, I was wheeled in the operation room, prepped and the process started. During the entire surgery, my blood pressure was monitored every 3 minutes and I was given adrenaline many times during all of this. I forgot to mention that I wasn’t allowed to wear my “Fitz babies” necklace into the surgery but when they brought Ryan into the room and he sat next to me, he showed me that he was wearing it. He’s wonderful and my heart still glows with gratitude to remember that moment. I had the memory of my babies there with us during this hectic process.  We had the NICU nurses on standby because Jax was at 36 weeks and it was protocol. Jax was born screaming but they realized he had too much fluid in his lungs and he was struggling to breath. They let me hold him for a whole minute before they took him in an incubator and had him on cpap. 

We thought it would be for just a few hours so we didn’t think too much of it. While in the recovery room, the NICU Doctor came and told us they ended up having to intubate and sedate Jax. He would have to be like that for a few days …. I honestly had no clue what that all meant. I didn’t understand the severity of all of it so I was calm. I wasn’t allowed to get out of bed for 24 hours because of the magnesium so I never got to see Jax again on Friday until that next day. On Saturday, they told me if I would get up and walk, they would let me go see my baby. I didn’t wait another second to get my butt up and walk. Ryan wheeled me to the NICU shortly after and I finally got to see my Jax again. That was a hard moment of realization. I saw the tube in his mouth and it nearly broke me. They explained that he was being sedated with morphine and they had IV’s hooked into different parts of his umbilical cord. It was hard to see and hard to hear what he was going through. 

On Saturday night/Sunday morning around or before midnight, Ryan and I were woken up by the NICU Doctor. She had some news that nearly killed us. All she knew at the time was that Jaxton’s vitals were slipping and they already had him at the highest oxygen they could. They were going to do X-rays and other testing to see if his heart was the cause. Their plan was to have him careflighted to Dallas. For a moment there, they put losing him as a possibility. I never cried and prayed more than I did at that moment. We told the doctor that we were getting up and dressed and we would meet her down stairs. I instantly called my mom and 2 bourse later, I had my mom, dad, sister, both bothers, my sister in law and nephew all there to give us support and strength. I don’t think they will ever know or comprehend how much that meant to both Ryan and I. I desperately needed them there and they made it happen. Best portrayal of what a family is right there! After testing was done and they finally got Jaxton stablized, results showed negative to any type of heart condition. (Thank you God!) When we were reassured that the baby was stable and back on the right track, we all went to my room and slept. All 9 of us. (Well I think my brother and his wife slept in the car with my nephew…. I don’t quite know. <— see the sacrifice?! Love my family!!) by the morning, Jaxton began to regain strength and his vitals were going up. From then on, baby boy showed us how beautifully prayers work. See, that morning, I texted family, church family, friends and anyone that I knew that would pray over Jax. I told them we needed the prayers and they, thankfully, accepted to pray for us. God showed his power because by that next Saturday, Jaxton was released from the hospital. Many might say, “well it would happen eventually. Why would you say it was God?” Here’s my reason, those doctors & nurses that spend days with him and knew his situation better than I could ever understand it were in awe of how quick if a recovery he had after that scary night. They couldn’t understand how he instantly started doing so well that they could start weening him off of the oxygen by Monday night. I was finally able to hold him on Tuesday. Have I mentioned how HORRIBLE it was to not be able to hold your child for days and the feeling a mother feels when their baby is crying and you can’t hold him to comfort him? I cried when they told me on Monday morning that I might be able to hold him that night and then being told that night that I wasn’t going to. My heart hurt so bad. I just wanted to hold him and let him know that I was there and that I loved him so much and that I was sorry for what he was having to go through. (I know it’s a run on sentence but emotions seem to be like that) He did amazing when they completely took the oxygen off of him on Friday. By Saturday morning, they were planning his discharge. We were all so ready for him to be home and well. 

Jaxton has been home for an entire week now and he is thriving. He’s a complete different baby and he seems stronger every day. His lungs are still very weak and we have been advised by both NICU and his pediatrician to keep him away from crowds and or kids. Actually, they just said to stay home. Any little cold can take a turn in his body. It’s hard to be stuck at home but I don’t ever want to see my son like that again. His diagnoses was lung disease and PPHN (persistent pulmonary hypertension in newborn) it’s a very scary diagnosis. Just look it up and his case will become more understandable. Jaxton had a collapsed right lung but it wasn’t stunting his progress so they had a pulmonary therapist helping him through it. 

This is our story of how Jaxton made us such weak parents but at the same time, stronger ones. Our trust in God became our only hope and the reason we survived this bump. Ryan and I were literally broken down so many times during it all and we saw each other at our weakest, yet, we grew closer because of it all. We see our living children as miracles and fighters. They both made this way into the world with different stories but they both had to fight. We are beyond thankful to God for allowing us the blessing of Remi and Jax. They are the light in our lives and we love them just that little bit more because of it all!  

 

Our “last minute baby” and our decision on prenatal testing.ย 

Well hello all!

It has definitely been a while since I have blogged. I’m horrible at keeping this up but there are days like today that I feel it necessary for me to share parts of our life. Why? I have no clue. Maybe it’s just so that family and friends can have the capability to understand why we do things and why we are how we are. Or maybe because I know so many of our friends and family have questions but they do not want to ask us for reasons I do not know. We are an open book and we will not lie about our feelings and our actions even if it’s about our marriage. We just aren’t that private I guess. 

Let’s start this off where I left off last time and that was losing our little baby in October….

Two weeks after our loss, I brushed my tears off, got out of my self pity party and figured out a way to get me through it. How? I walked my behind into the gym, got a membership, and got me a personal trainer. I am very blessed and glad God sent me this way. You see, I met some wonderful people that have made an impact in my life. Working out became my outlet and I will give you an example of how. I can tell you of each day my trainer would push me to my limits but you would see me keep going. My push was this, when my body wanted to give up, I would literally tell it “you hurt me by losing my baby so now I will make you hurt”. No one knows this nor have I ever shared it with anyone, but that was my push. 

Ryan got a promotion, for the second time in less than a year, a month after our loss. (On his birthday!!) I can’t tell you how that helped him because he is harder to understand. But I do know he loves his job and the people around him there. It was a blessing and that was something we both needed. TGBTG for that blessing. 

So here is why this baby is our “last minute baby”. This may be TMI in some parts so I will apologize now. I’m sorry if any of this is too much for you….. We seriously were in a place where we were content about where we were. Ryan has an office job while I fell in love with weightlifting. Who wants to mess with something when it’s going so good?! Obviously we do, at the very last minute! All I will say is that we knew when ovulation (I was still on hormones since right after misscarriage) was and at the last minute we said, fine. Let’s get it over with now! (That’s going to be a great story to tell this child!) And sure enough, this kid was created and the proof was on the 3 test I took. Yes, I did 3, than one every other day for a week. I was instantly put on bed rest and another personal battle was happening with me. I would wake up at night thinking about how many more weeks I might have with this one. I would calculate how far along I was with my last and make that the hump this baby had to pass so that I knew he/she would make it to my arms. Of course it led to lots of water works and prayer! (I did this until I reached my 8th week) I guess that’s just the mind of a mother who has lost before and is just afraid. Believe me, I am far from being able to go a day without thinking of my last baby. I carry that baby’s sonogram in my wallet and I talk to it like a crazy person. That baby’s due date will be on June 3rd and I still have no clue how my heart and mind will react. I will take it as it comes but this baby is due in October which is a comfort because we lost our baby in October. It’s just a full circl! Our twins were due in August of 2011 and we found out we were expecting Remi in August of 2011. God has funny ways of showing us that He’s in control and I’m ok with that. 

Lastly, I want everyone to know that yes, we are having testing done for this baby. Our reasons are nothing less than to have everything settled and ready for if our baby does have Down syndrome. We had a tough time figuring out what all we had to do with Remi when she was born which stole us of time that could have been used to just love her. We don’t want to make that same mistake. We want to have the capability of having it all together before the baby is born. Now, if anyone ever thinks or believes that we will be sadden or devestated if the test comes back with a positive for Down syndrome, you must not know who we are. Down syndrome is all we know so we will be happy and celebrate this baby if that is the result. We will also be happy and celebrate if the result is negative but keep in mind, it will be scary for us because we will be new to being a parent to a typical child. But just like we learned how to be parents to remi, we will do just fine learning how to be parents to a typical child. To us, our baby will be just that, “our baby” no matter the outcome. The best thing from this testing is that we get to know the sex of the baby at a really early time instead of waiting for the anatomy sonogram!! 

Well my little monster is up and is dying for my attention. I must get to that asap! 

  

This one is harder to share

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Again, not so much about Remi but about her siblings.

This one will be a bit more intense because the wound is still so fresh… I will start this story with my first visit to my new and amazing high risk & infertility ob/gyn. It was a visit to start getting my body prepared for next year because that was the year we wanted to try for another little one and with infertility, you have to start preparing early. I will not go into details about the hormones and route we went but I will say that we started a process with a type of birth control. After 3 weeks of following my doctors instructions, nothing was happening but I didn’t read much into it until… the smell of food made me nauseous. I thought to myself, ” there’s no way!” I waited 2 more days and nothing. So we made a trip to cvs, took the test and those two pink lines showed up! All I told Ryan was, “what did you do to me?!” We literally freaked out and could not believe it! Once it sinked in, we started getting excited. We even told Remi she was going to be a big sister!!! Her reaction? She cried!! We called the doctors office that upcoming Monday and he wanted to see me ASAP!

Fast forward a little over a week later, on a Thursday…..

Our baby’s first appointment! He/she was 6 weeks that day! We were afraid of bad news because I had already started spotting. We were taken into a room where I was told to put on a gown and “let’s look at this little baby.” What mother wouldn’t be excited to see their baby on a screen?! So I hurried and got ready to see our little bundle of joy! There was a flat screen mounted in front of the bed so we could see what the ultrasound tech saw on her screen. She quickly found our little one. It was heartwarming to see him/her. So little. So alien like and then the best thing an expecting mother can hear come out of a techs mouth, “there’s his/her heartbeat!” That beautiful, tiny flicker! Tears flooded my eyes. My baby was ok. He/she was strong. He/she was where he/she needed to be. I felt a tidal wave of emotions hit me. I was going to hold this baby in my arms one day. He/she was an unexpected miracle that we thought would take a lot of hard work to have but there that baby was. Thriving and holding on. The ultrasound tech called in the doctor to look at my cysts that my uterus and ovaries like to harvest to make sure they wouldn’t be a bother to the growing baby. The doctor was not worried and then he says, “I knew this was going to happen because your blood work showed you had just ovulated the day of your first visit!” Who would’ve known?! My body finally decided to ovulate after 2 years of no ovulation. My doctor assured me that the baby was fine and as long as it was just spotting that he wasn’t worried. I went on my happy way home with a picture of my baby with me and the memory of his flickering little, tiny heart.

The next day, it was no longer just spotting and by Saturday it was beyond normal pain and bleeding. We went to the ER where, again, nothing was done except for blood work. My hcg levels were still high so they didn’t want to mess with anything meaning I was going to have to endure the pain of it all because they did not prescribe me anything in the chance that the baby was still hanging on. (My doctor was not happy with this when I told him about that visit.) So we came home where I tried to relax and ignore the pain….. The pain actually got stronger and when it came to that point of excoriating pain that had me screaming and those chills, I knew. My mind flashed back to my twins. To that pain. To that sadness. My mom rushed over and helped to ease the pain. I told her, “It’s whatever God’s will is, mom and I am just going to let my body do what it needs to do. Nothing can be done to save my baby.” I laid there, crying from both the emotional and physical pain. I kept hope that he/she would make it. I spent the weekend in pain with no way of making it go away. No way of taking care of Remi and no way of having the ability to even hug her.

On Monday, Remi had an appointment in Dallas so my parents drove us there and they did all the “Remi caring”. They carried her and sat with her during her appointment. I was still in pain but a mother does what they have to do for their babies. On our way back home, we stopped at ihop. Again, I will spare the bloody details and just say…. He/she was gone and so was the physical pain. It didn’t quite sink in. I was quiet and just thoughtful on our way to the hospital. I called Ryan and of course, he met us there. I was quickly admitted and put into a room. I knew the routine: put on a gown, go in a pan for excess tissue, get checked down there and have an ultrasound. I felt numb. I didn’t know what to do. I didn’t know if I wanted to cry or be mad! I didn’t know if I should scream or just not think about it. They put me on an IV and gave me doses of morphine. I had both my mom and Ryan by my side. My dad and little sister had taken Remi to eat then shopping. By then, I was too drugged up to feel any emotion. I was glad for that. I didn’t have to think about how my body had deceived me. How it had taken away our joy that we so happily shared with everyone. How once again, it failed to keep my baby safe! Having an ultrasound done just 4 days after seeing the heartbeat to seeing nothing there anymore almost broke me. It’s like being given your most favorite thing in this world and then, it was taken away forever. You could never again have that thing. At least not in this earth.

By that evening, Ryan and I came home to grab some clothes (we were going to stay with my parents for a while. For my sake at least.) where I finally broke down. Broke down with so much hurt that all Ryan could do was hug me. Hug me and tell me, “we will make it through, again.” For the rest of that week, I laid in bed, took my meds and drifted to sleep. I couldn’t mentally be a mother to my daughter. The greatest joy of my life is being a mother and this loss completely broke me. Remi was not interested in being around me. My mom took over the role that was mine because she knew I just needed time to mourn and grieve for my unborn child that she herself held in her hand until we got to the hospital. She even said goodbye to him/her when they took the gestational sac and the baby for testing. I cried silent tears hearing her tell him/her goodbye because all I wanted to do was be able to hold him/her. My mom was my supporter while Ryan was working. Then Ryan would take over. They tried making sure I ate and that I was getting out of bed once in a while. I would go a day or so without eating because i wanted my body to hurt for what it did to me.

Finally, four days later, I got up early with Remi, and I spent that entire day being her mother. I did the feeding, the diaper changes, the playing, the everything like I use to. That’s when God pointed out to me that she is still here and I have to be strong for this little girl who needed me. All of me! It’s hard to confess my lack of being 100% there for Remi. It’s hard to even think that I let myself wallow that deeply. But I did. I cried for my baby. I cried because my uterus no longer housed a baby. I cried because I no longer felt my pregnancy symptoms. I cried because we no longer had this new baby to look forward to,

We have gotten through this loss but we are still hurting. I’m afraid to be asked how I’m doing for the fear of breaking down right then and there. I am learning to keep myself and my mind busy at all times and completely focusing on Remi. Tonight, I let her fall asleep watching her shows because I wanted to hold her in my arms and when I did I realized that I will not hold my babies in this lifetime. I will never rock them to sleep or sing to them Remi’s song, “you are my sunshine”. I will never feel their kicks nor know their cries. Nor will I see them sleep, crawl, walk, lose their first tooth or anything. My body feels so empty. It’s missing something that was suppose to be there for 40 weeks. Sometimes, I forget that I no longer have my child within me and for that split second I’m happy and then it hits me. He/she is gone. I told Ryan that I’m happy I got to sing “you are my sunshine” song before he/she left us. I have told God to just take care of them because I will be there soon to be able to hug them and not let go. To sing to them and tell them how much I love them from the moment I found out they were sharing my body with me. I yearn for that day, but for now, I’m here to raise Remi and for a purpose that God has for me.

These are very emotional moments in our lives. It’s a personal experience that I have chose to share with you. An experience that many women do not share because people say if the baby isn’t born, then it is not a baby. That their babies are insignificant but that’s the greatest lie that has hurt so many hearts. If you ever carried life in your womb, you are a mother and that is YOUR baby! I write these experiences in honor of our twins who we loved and lost on December 4, 2010 and for our most recent angel that met God too soon on October 13, 2014. My heart aches to hold them everyday….

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A moment into our pain

This post isn’t much about Remi but it is about her siblings that we never held.

I pondered this post for a while for many reasons that only make sense in my mind. I will, however, say that I will do it because it will help me remember and acknowledge a LIFE! So here are our stories about our 3 wonderful babies. Our much wanted, already loved babies and an insight to understand our pain.

Ryan and I married in November of 2009. After 1 week of wedding planning, we had a beautiful wedding. (Yes, you read that correctly. ONE WEEK! We had the whole big dress and tuxes and the whole glamor!) Many questioned our marriage believing that we were marrying because I was pregnant but what no one knew is that… I am medically infertile. We planned to wait on having little ones and just enjoy each other but that all changed when that digital pregnancy test showed those beautiful words. “Pregnant” in December 2010. We were shocked! I even had to re read the instructions to make sure it didn’t show “pregnant” before adding the “not” in front of it! Such a happy day but it only lasted 3 days. On that 3rd day, I began to have lower abdominal pain so we rushed to the ER. We had to wait an hour for blood work since the doctor didn’t believe I could be pregnant. (There’s that infertility stereotyping!) He comes in and says, “well I can’t argue with blood work.” Ya think?!

Fast forward a couple of hours to the ride home after he did nothing…..

I remember this part the most. This is where it starts hurting my heart and it’s a moment that no matter how much I have tried to forget and remove from my memory, it still so clearly engraved into it. I began to have pain. Pain that felt like someone had grabbed a knife and just kept digging it into my stomach. Pain that had me screaming with so much agony that just remembering my own scream gives me the chill bumps. We were just getting home so Ryan helped me inside. He laid me down on the bed and piled blankets on top of me. He sat there next to that bed, holding my hand and talking to my mom on the phone. I remember his face. So afraid yet trying so hard to be strong for my sake. I kept saying, “We are going to lose him. He’s not going to make it. I feel it in my heart!” My biggest fear started happening. I felt an urge to push so I rushed to the bathroom where (I will save you the bloody details) he/she was gone…..

I broke down. I broke down like never before. I screamed from emotional pain. From losing this unplanned baby that was so ridiculously wanted. We had plans and we had love for this child.

The rest was such a blur. I was in pain emotionally and physically so details weren’t important. I remember Ryan carrying me into the hospital like my knight in shining armor. I remember being told that there was another “embryo” they took out. (They were twins) I remember Ryan holding my hand, kissing my forehead and with watering eyes saying, “I’m so sorry!” That man, he’s something beautiful. It took seven months of grieving. Seven months of being angry at the world until we finally said, let’s try again.

Remi is our rainbow baby. She brought so much joy and love into our lives. From the moment she was born, she has been near me. I couldn’t bear not having her with me. She was mine. She was the baby we so desperately wanted. She was also the spitting image of her father and she was in MY arms. Happy, healthy and so fragile. I call her my “womb survivor” because my body tried kicking her out too and although it did at 34 weeks, she was healthy enough to go home with us after 3 days!! We have a GREAT attachment to Remi that people think it’s crazy but they might understand if they knew our story.

This is the story of our “chick pea” twins. The ones that showed us what it was to lose part of you and the ones that made us parents. They are our first babies and they were never acknowledged because people told us to wait until we passed the 12week mark. We were 1 week away from that checkpoint when we lost them. We will never again wait for that 12 week mark because to us, they are a significant part of our lives. We will mourn them and grieve for their lives. To us, they are our babies. They are part of us. They have made us the parents that we are to Remi today.

I will write the story of our most recent loss soon. Maybe tomorrow….. Until then, thank you for taking the time to read part our story.

If you are having a good day, this might depress you, so save for another day

I’m sitting here trying to figure out how to start this blog post. I don’t know how to entice you all into trying to understand my life these past few months. It has just been an emotional roller coaster. One that I’d prefer to sit out of.

It becomes harder and harder to see myself as strong enough. I’m human and by no means perfect. Who wouldn’t prefer an easier life? I feel like a failure in my daughters life so many times and I don’t know how to be or do better as a mother. Parts of me are excited for her turning 2 but then it turns me to tears because I realize she isn’t walking just yet. You may think it isn’t so bad but it is when you realize that that is a huge milestone to their independence. It taunts me daily, making me feel so inadequate.

As a mother to a special needs toddler, I’m expected to not show my frustrations, let alone my imperfections as a mother but here I am. I’m putting my emotions out there because I hate the feeling that I just shouldn’t have any negative feelings. It’s not like they are towards my daughter. It’s my disappointment in myself because I am the adult. I am the mother. I am the stronghold of my family. It is for me to make sure my daughter can become exactly who God wants her to be and to reach every goal she will have in life. Sometimes, I wish I could forget every goal and skill that she has to reach and just ENJOY HER!! I just want her to be who she is going to be and not just because the world has a standard. To live on a secluded island where no one compares her (especially myself) to anyone or anything. I just want her to be….her. To grow and learn at her own pace. Not being pushed to do something she does’t want to do. She has became a stubborn little girl but I believe it is from being forced to learn or do something because there is a chart that shows what she SHOULD be doing by now. It’s all about charts and averages and blah blah blah! It becomes so overwhelming that it’s going to make me go crazy! So when you question my sanity or see me have a meltdown, you will know to blame it on doctors and their charts! ๐Ÿ™‚

A letter for our family & friends

Dear family & friends,

Today I was reminded, again, of how blessed my little family is, especially Remi. Want to know why?!

People like you!!

I can’t explain how hard it was to hear the words from a doctors mouth telling me that Remi has Down Syndrome. All the thoughts that ran through my mind was too much for me to handle at the time. I kept it to myself and immediate family only until she was 3 months. I wanted to build that connection with my daughter without others opinions except. When I finally decided to tell everyone else, I didn’t know what to expect. I didn’t know how to even tell people. So I started this blog & through this blog, I have shared my thoughts and life with Remi Jane & here is why I am thankful for you!

Since that day, you have been supportive to our family. You may think that you haven’t done much but those likes or even those times you see her picture and smile, that’s what makes us happy. When you celebrate Remi’s small victories with us after so much therapy and practice! Especially those wonderful comment that, you may not know, but means the world to us! Those email with information of DS or a story, it blesses us so much and we are so grateful! You have been such a big part in our lives by just caring for Remi! Thanks for seeing her as just Remi and not just defining her for her DS!!

This Fitz family appreciates it all & we thank you for your support in this wonderful new journey as new parents!!

With tons of love,
V.F.

It’s been a while

So Remi & I have been hard at work learning so many things. ( Crazy how we really don’t realize how so many skills have to be mastered for one big skill to be done) we have been working on sign language, reading, walking independently, talking, self feeding with utensils, pincer grasp, cruising, potty training, etc… It’s OVERWHELMING!!!

I’m sitting here thinking about watching my little sitter grow from the time she was born until now. We never once thought about how we could improve motor skills…. We would just say “it’ll come, it’ll happen” & yes it did. We didn’t worry about the little details. We just enjoyed her and played with her & we’d let her explore and learn things on her own.

I realize all this and I breakdown. How it was wonderful to not worry about it. With Remi, every moment she is awake, I take advantage of it and “play” with her. (& when I say “every moment” I mean it literally) except her play isn’t just play time. It’s more like therapy time. It’s learning new things time. Bettering a skill time. Figuring it out time. It becomes exhausting to me. During her sleep time, I either clean the house, prep or cook for dinner, or mostly I’m doing research online on the latest things for Down syndrome. Being a stay at home mom, you would think I would have at least a little bit of me time but I wish someone could do this for me for an entire day and realize how much energy it takes to be me right now! I stay up late at nights to finally have some me time. To catch up on shows & maybe some eyebrow tweezing. Haha! It’s so great that I force myself to stay awake until I just pass out!

I always question my strength as a mother but God made us mothers so ridiculously strong that even when we are so tired and worn down, we still have the strength to do anything that needs to be done for our kiddos! (Not to mention that I say Philippians 4:13 in my mind when I want to give up.)

Its such a tough road we are in. Teaching Remi these skills have tested me in so many ways, especially my sanity. It’s broken me down so many times but that little girl has my whole heart. I love her so much that it literally hurts! I will not give up on my little one because she has made me such a happy mommy! A proud one at that! Her hugs are what I look for everyday, especially her bright smile. Gosh, if I could only squeeze her forever, my life would be perfect!

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 sensitivityย 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.ย 

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 ๐Ÿ˜‰

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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!!!!!ย