I’m A Big Girl Now!

I can’t believe this but my baby girl turned 8 months old yesterday. Where does the time go??? I am excited for each and every new thing that she accomplishes, but I wish time would slow down too! Speaking of new accomplishments….that is what this post is all about. The last 2 months have been full of them.

For starters, Regan said her 1st words on New Years Day. We were visiting some of my family for a few days, and while we were there, she busted out with “Dada” as clear as day. Not the typical “dadadadadada” that a baby babbles when they are learning the ‘d” sound. And not too long after that came the ever surprising, “Hi Dada”. Cutest thing ever! (Even though I would like to get a “mama” in there! But, I guess I will have to wait for that one. She even uses, “hi dada” at the right time. Todd will say “hi baby”, and she will go, “hi dada”. Totally surprised me the first time I heard it. I thought I was just imagining it, but she kept saying it, over, and over, and over, and over. With a big smile on her face. So proud of that little girl!

Next comes the sitting up. As you can see from the picture above, she was very happy about herself when she accomplished that! It happened very fast too. We started seeing great improvement with her sitting about a month ago. And it was slow going, but then 2 weeks ago we sat her on the bed to play with her like we usually do in the evening, and she stayed up…..for 3 minutes! The next day……5 minutes. And now…..10 minutes……sometimes longer, until her muscles get tired. But it is so awesome to see the progress that she makes. She is such a strong little girl!

One night recently while she was sitting on the bed, I said, “Regan, give me high five”. (We have never taught her this before.) She put her hand out to reach mine as if she has known how to do this all along. Todd and I were laughing, (almost the happy tears along with it), as there was no need to teach her that one. She saw my hand go up, and she was like, I can do that too Mom, just watch!

Another night as Todd was coming home from work, I was telling her, “Daddy’s home”. She gets very excited when she hears that. As he opened the door to come in, she saw him, and put her arms out to the side (like she wanted a hug) as if to say, “come get me dad”. I love these moments! The first time you see your child do something new you cannot help but smile. And wish that they would do it again so that this time you could have the camera ready!

Last week we had a picnic in the park. (One of the great things about living in Florida….you can have picnics in February!) Regan loved being outside. It seems she likes the breeze as it hits her skin. She got to try the swings for the first time, as she can support herself sitting, and I needed her to be able to hold steady. She was very unsure about it at first, as is evident in the photo. She warmed up to it after a little while. I just love that precious little face she is making!

Finally, we visited Sea World yesterday, on Valentine’s Day. We had the best time! It was Regan’s first time there. She has been to a couple of theme parks already, but this is the first time where she was old enough to really notice some of her surroundings. She absolutely loved the dolphins! The above photo is during the dolphin show, of which she was mesmerized. There was so much going on she didn’t know what to look at! But when we went to look at the dolphins up close, and they would pass by us, she would get the look on her face like “whoa…..what was that”. So cute! Another one of the things I love about living in Florida….all the great places our family gets to visit.

It is hard to believe all that Regan has been accomplishing. And to think my little Angel just turned 8 months old…….whoa! I am so proud of her development…..but the time is going way too fast! Sometimes I think that is a blessing of Down syndrome. You get to hold on to each milestone, and each achievement a little bit longer, before the next one hits. There is something beautiful in that. Now I just wish I could slow down time too! Before I know it we will planning her 1st birthday…….

“Having a child with Down syndrome has changed my life…
my life is brighter
my life is more wonderful
my life is filled with love”

Baby’s 1st Christmas

This was positively the best holiday season I have ever had. And I absolutely LOVE the holidays. But there is nothing like seeing it through the eyes of your child. Even though Regan was only 6 months old at Christmas time, and had no idea what was going on, lol, I sure did! And I loved every second of it. Of course, she found the wrapping paper the funnest thing to play with – as we were expecting. But it was cute anyway! We had fun putting bows on her head after she opened her gifts. As you can see, she didn’t enjoy that quite as much as we did…..

Earlier in the month we took Regan to Hope Haven. That is a clinic that specializes in children with DS. They do very thorough developmental evaluations, in which they give you strength based assessments. This place was absolutely wonderful! She had one hour with Physical Therapy (PT), one hour with Occupational Therapy (OT), one hour with Speech Therapy (ST), and an hour and a half of educational information. We learned a lot at each visit, and were happy to hear that at 6 months ( a little over actually), that our little Regan was doing very well. We have been hearing that all along, but you never get tired of it! They gave us some general suggestions of things we can do with her to keep her on track. And they suggested that we get her some PT about once every other week to help her with her rolling. She can roll, I have seen her….but she must not feel it necessary, cause she doesn’t often do it. So she will be starting that soon. I was also happy to hear that Hope Haven will help us with her IEP’s for school. An IEP is an Individualized Education Program. All children with Down syndrome will get one of these each year. It basically sets goals for each individual to achieve each school year. Children with Down syndrome are sometimes integrated in regular classrooms for some, or all, of their curriculum. But since it may take them a little longer to learn new things, they do not always have the same goals as the “typically” developing children. But each child is different, DS or not, so that is why an IEP is so great. We don’t want to place all children with DS into the same classrooms all the time, because each child will excel in different areas. And Hope Haven will help the parents with that decision – guiding us in the areas in which the child excels, and knowing where the child may need some extra help. I am so thankful for all of the wonderful programs, and services that our out there to help those of us parenting children that may need a little help along the way. I am sure that Regan is going to do great!

On another note – I started thinking back to those 6 long days that Regan was in the NICU in June, and how that was one of the scariest times of my life. So many wonderful people in my life helped us out during that time by bringing us meals at home (after I was released), coming to visit just to give us support, and just doing whatever they could so that we didn’t have to worry about any of those typical “life” responsibilities, and that we could just focus on Regan. I am so grateful for that. Receiving Regan’s diagnosis at birth was one of the hardest things to hear. And that by itself was enough to handle. I experienced so much stress, anxiety, nervousness…you name it, I felt it. (There was also a great amount of joy….as I loved my new baby girl!) Eventually the fear passed….but for that while in the NICU, I was scared.

So as Christmas was approaching I started to think about all the children that were in the hospital at this time of year. I also thought about their parents and how scared they must be for their child, and how overwhelmed they must be with everything. I imagine they were hoping to have their child home for Christmas, and for some of them, that may not be possible. So I wondered…..what can I do for these families? So I decided to make a toy donation to the local children’s hospital. It wasn’t much, but it was something. When I went to the hospital to drop off my contribution, I was amazed at the large room that was completely filled with toys donated by other individuals and businesses in the area. Even though my contribution was small…..a few children were going to be happy on Christmas because of it. And a few parents may be a little less stressed….. their child had a Christmas, even while in the hospital. Todd and I have decided that this is something we want to do every year. We probably had as much joy in our hearts as the families that benefited from the donations. Christmas really is about giving…..so that is what we did. Besides, we had the best Christmas present we could have asked for – we had Regan home with us!

In having a child with DS, we have learned that you never can know what life is going to throw at you. That 1 in 900 chance of our little girl having DS proves that. No matter how unlikely something is, it can still happen. You actually can be the “one”. I am so thankful that I was able to help some families that had to spend Christmas in an unfortunate place like the hospital. There really isn’t any preparing for something like that. And when something like that happens, and it can happen to anyone, it is nice to have others fill in so you can focus your time where it needs to be – on your family. I am learning a lot about myself on this journey. I never really thought of myself as a selfish person, but I know I am much more unselfish now than I may have been before. I have God, and a beautiful little girl with a little extra genetic material to thank for that. She really is my little miracle!

“Nothing you do for children is ever wasted.” – Garrison Keillor

The Value in Difference

Just before Thanksgiving we had some professional photos taken of our sweet little Regan. (It was hard to choose….but those are a couple of my favorites!) Sometimes I am astounded by the beauty of this baby! And…not just that outer beauty that is so evident in these photos. This little one is going to have a heart of gold…I am certain. My life is so joyful because of her…..and that she was born to me. I love being her mom!

An interesting conversation stirred between my husband, a Tutor, and one of his students recently. For the sake of privacy, she will remain nameless, but for the story’s sake, I will mention that she is middle-school aged. So here goes….Todd was tutoring this young lady one afternoon, and helping her with her English. He was trying to explain antonyms to her….but in the process he drew a total blank on the word antonym. (Go figure!) So, as he was trying to get the word out, she guesses, “amniocentesis”, as it was the first thing she thought of that started with the “ah” sound he was making. Much to his surprise….as you wouldn’t guess a middle schooler would even know what an amniocentesis is, or that it would be at the forefront of their mind. So, Todd said, “No, not amniocentesis”, and then the word hit him. He said, “antonyms”. She said, “oh ok, I know what that is.” But Todd was interested in why she had amniocentesis on her mind. So he asked her what she knew about an amnio. And she replied, “It is a test that a pregnant woman has to check if the baby has a birth defect.” (That term birth defect just makes me cringe!). He asked her how she knew about that, and she said she learned it in school. (It was either science or health class.) Todd was shocked as he could not recall this type of thing being taught in school. So he then asked her, “Well what happens if the test shows that your baby has a birth defect?” The answer she gave is shocking, “Then you abort the baby”. Todd responded with, “Why would you abort the baby?” And she says, “Because, who would want a baby with a birth defect?” Todd sat there for a moment, and then told her, “My daughter has Down syndrome.” She paused, for quite some time, and did not know what to say. He could tell she was feeling uncomfortable at that point. She then changed the subject and they moved on.

When he came home that night and told me this story, I did all I could to help the tears from falling down my face. Not because I am sad that my daughter’s condition has the horrible label of “birth defect”, from which I will not refer to her. But that society is so anti-differences. We are so afraid of what we do not understand. And I get that there are people out there that could not handle this diagnosis. For starters I would ask  them to research it, to be sure you understand what Down syndrome actually means. And if at that point, you still cannot handle it, there is always adoption. There is a wait list in the US for people wanting to adopt babies with Down syndrome. But to think that our schools are indoctrinating our children to believe that being different, to one degree or another, disqualifies someone from being able to have a chance at life, is beyond unreasonable to me. When I think of the idea that babies born with Down syndrome may be fewer and fewer, it makes me sad. Mostly because I feel like that is society putting a “not as worthy” label on my daughter, and those like her. I definitely never expected that my child was going to have Down syndrome. When you realize you are pregnant, and start imagining what life is going to be like with your new baby, that is just not something that you ever think about. But when that baby arrives, Down syndrome or not, they are still your baby. And I could not love Regan more if she didn’t have it. I love her as is. You learn acceptance, and unwavered love. And you want nothing more than for everyone else to do the same. And when someone, or many someones for that matter, believe that the “normal” child is more valuable, it cuts you deep. Because your child is valuable, even if you can’t convince every one of that. And you want your child to grow up feeling accepted, and loved, and wanted. That is all I want for her. And God knows…..the day that anyone even remotely attempts to treat her like she is less of a person, is likely the day that the mama beast is unleashed.  I think I could very well lose my cool…..but will do my very best to keep it together……for her! Because…she’s worth it!

“When we lose the right to be different, we lose the privilege to be free.”

– Charles E. Hughes

So Many Firsts

 So I have been underestimating the amount of time that I have……..as it has been 3 months since my last post. So needless to say, I have a lot to cover in this one. For starters, the above picture is my little sweet pea ready to go to her very 1st Halloween party. Isn’t she the cutest little ladybug you have ever seen?? I can’t get enough of this little girl. And as usual, she was the hit of the party. She has a group of people fawning over her everywhere we go. (Not that we mind!) Sometimes I feel guilty for thinking this, but sometimes I can’t help my thoughts, and I will begin wondering, “Would these people feel the same way about her if they knew that she had Down syndrome?”. I feel terrible that this thought crosses my mind. But it does. And then I have to swat it away in a hurry. Because I have promised myself that I will not lose out on a second of my daughter’s childhood, to think about what others are thinking, or not thinking. I cannot however, pretend for one second that this is an easy task. Because it isn’t. And in all honesty, the thought is warranted. The abortion rate is as high as it is because to some, there isn’t as much value in a child with a disability. There is a misconception about these individuals, and I am hoping that I can play a part (even if only a small one) to change that. There is so much value in my Regan!

Regan is doing well with feeding. We began introducing her to solid foods, and from what I can tell, she is doing great. She keeps most of the food in her mouth, and does not seem to thrust her tongue out as is common with children with Down syndrome. Overall I think that she makes less of a mess than most babies I have seen being fed, and she does it with a smile too! She doesn’t seem crazy about bananas – which she gets from me. But at the same time, those jarred bananas smell funny – so it could just be that. We are trying 2 new fruits and vegetables each week to see how she adjusts to each one. And to make sure there are no allergies. Children with Down syndrome may have more aversions to different foods and textures than would be common with a child without Down syndrome. But so far she seems to be doing very well! And she is stubborn to! When she has reached her end with it – that mouth isn’t opening for anything!

Early November we visited with a Geneticist for the first time. We were receiving many different opinions in the Down syndrome community on whether it was worth it to take Regan. Some people loved the experience, and others did not. Todd and I could not seem to get to the bottom of why the opinions were so different, so we decided to give it a try. We figured we could always stop going later. But after our first visit, we were glad that we made the trip. We have been hearing so many great things about Regan and her progress since she was born, that we had no reason to think that we should be concerned with her development at this stage. But it was very reassuring after the Geneticist told us how wonderful she was doing. Her exact words to us were, “I have been doing this for over 35 years, and it is my job to tell you the truth regarding your child’s development. Regan is doing great!”. We were thrilled! Todd asked her, “What are the chances that our daughter (or anyone with Down syndrome) will be able to drive a car?”. She responded with, “Well……10 years ago if someone had asked me if it was likely their child with Down syndrome would go to college, I would have had to be honest and say that it was only a small chance. But now it is happening much more regularly. Same goes for driving. There is no way to know for sure, but the chances are increasing. So just keep doing what you are doing.”. And that is exactly what we are going to do!

“I may never be perfect, but I will always be unique!”

All Life is Precious

This is my little beauty at 4 months old. Such a pretty little thing – not that I am partial or anything! I have very exciting news to share this month. Our little champ has full head control! And I have to say it is way easier carrying her around now. Also, she has started rolling from her tummy to her back. Not on a consistent basis yet, but when she feels like it I guess!  So proud of her – she is one tough little cookie. She is still smiling and laughing like crazy. It is the cutest thing to see as her whole face lights up, and she squeaks! It is surely the best part of mine and Todd’s day.

Regan is in the early stages of teething as well. The first clue to that was the enormous amounts of drool that has been coming out of this kids mouth! I mean…..crazy amounts of drool! And she wasn’t much of a drooler before – so that was the first sign. Then came the out of nowhere screams. She overall is a very good, quiet, happy baby. Then there is the zero to scream side of her that we had not seen before. So after taking a peak inside her mouth to see if our hunch about the teething was right, it was confirmed – white gums. So our little one is on her way to her first tooth!

About a week ago our early interventionist, hereafter referred to as Kelly, came for her second appointment with Regan. And in similar fashion to the first appointment, Miss Regan blew her away! (Let me just throw in here how awesome that has been to hear, and see. Especially when your child has DS and there are so many things that you can be told that your child may not do well, if at all.) But Regan is still doing great, and surpassing expectations. We couldn’t be happier for Regan and the accomplishments she has already made. We often say she is kicking that Down syndrome right in the butt!

On a different note, we had somewhat of an unsettling experience at the hospital a few weeks ago. (Regan is fine – but was having an adverse reaction to a change in formula, and wasn’t keeping it down. We changed the formula back – and now she is doing great! ) While at the hospital, something was said to us by one of the doctors that has had my mind pacing, if you will, for the last few weeks. It really didn’t hit me at the time we heard it, (obviously as we had a sick baby we were worried about), but it resurfaced about a week later. In recalling the conversation we had with this doctor, we had begun telling him about the circumstances of bringing her in. In doing so, we mentioned that she had DS, as we tell that to all medical staff that she sees, as it is always best to be upfront about it. We continued on and he began asking if she had any medical issues prior to this. We told him that she has been just fine since we brought her home from the hospital, but that she had some issues right after she was born, and therefor had lots of tests run. He asked if the tests showed any complications, and we told him everything was good, but that we learned that she had DS. (And this is where this story gets a bit shaky.) At that point, he looks at me, and with somewhat of a bold tone says, “oh, you mean you didn’t know?”. I proceeded to tell him that I did not have the prenatal testing done. Then he asks, again with a bold tone, “well didn’t they offer it?”.

Like I stated earlier this didn’t really affect me too much then as we were busy making sure Regan was ok, but when I look back on this now, I am a little annoyed, to say the least. Unfortunately this is the mentality of some medical staff. Instead of saying, “oh you guys seem to be doing great with this”, or “she is one lucky little girl to have supportive parents”, or even to simply say nothing at all. But apparently the big deal here is to make sure that all OB doctors are offering prenatal testing to their patients. That was his concern. So I told him that yes they had offered it, and that I didn’t take it. He looked perplexed and moved on. I feel sad that prenatal testing isn’t looked at as just an option, but almost a mandate. (As I have stated in the past I am not against the testing – just against aborting. I just knew that I would be a wreck during pregnancy if I learned that way. And no matter what I was keeping her!)

This type of situation is what I would like to see changed. Yes, by all means, allow someone to be prepared for the challenges that may lie ahead, if they wish to know.  But I would like the medical world to stop treating the testing as if it were a solution to this so-called “problem”. Even while getting the diagnosis at birth – it took time to get to where I am today. You go through an array of emotions (these will be covered in a future post). I could not have imagined going through those emotions while pregnant. And then to have someone tell you that you have only so many days to abort. Why not give those parents contacts of other parents in the community that have been in their shoes. (I have offered to do this at my OB office). Tell them about how much people with DS are accomplishing today. Let them know that the life expectancy is 60+ compared to only 25 from 30 years ago, and that their quality of life has drastically improved. (Worst case scenario – tell them that there is a long list of people wanting to adopt babies with DS.)  I hope that myself and others in the DS community can make a difference regarding this process. It breaks my heart to think that a child may not be born because the parents were given an out of date, biased opinion on what their child can and can’t do. If you are a parent that has received this diagnosis, or if you know someone that has received, or at some point does receive this diagnosis – please be as informed as you possibly can. You will be so incredibly surprised at what that child can do! I am – every day!

  “What a privilege to be here on the planet to contribute your unique donation to humankind. Each face in the rainbow of colors that populate our world is precious and special.”   

— Morris Dees

Forever Changed

Here we are with our first present day post. It took me a while to catch everyone up – but now we are current. Regan is just a little over 3 months old now. (Wow….cannot believe how fast this goes.) And I just have to say this has been the best 3 months ever! This little girl brings so much joy to me every day. Indescribable! A week ago her early interventionist came to our home for the first time, and might I say that she was more than impressed with our little Regan. We had mentioned to her that Regan will mimic us when we tell her, “I love you”.  At first I don’t think she believed us. But later Regan showed her exactly what we were describing. It was awesome. She was blown away that Regan was doing that at 3 months old. (We were so proud!) She said she would guess Regan will be quite the talker – as she makes lots of noise already!

Regan is doing pretty well with her head control as well. When carried she is holding it up for periods of about 15 seconds or so. Then she wobbles a bit, lol, and holds it up some more. When on tummy time she is starting to hold it up for a few seconds at a time which is a huge improvement for her. And just today we noticed her using her elbows as a support – which is great! We are working with her on rolling over – but not as much luck with that yet. But it is still early. She can do it by herself from being placed on her side – which is a good start. So we will keep working with her on that. Overall the early interventionist told us that we should be very encouraged by our little one and her efforts.

On another note – something re-entered my mind today. As I have mentioned before I turned down all prenatal testing for genetic defects. Nothing was going to change my mind about keeping my baby – nothing! My husband and I discussed the possibility of having a baby with Down syndrome – and said that it may be tough at times – but we will take whatever challenges we get. Around 20-25 weeks in my pregnancy, I was on the computer and saw something related to DS. (Can’t remember exactly what it was.) I do remember getting this very clear feeling that if someone in my family was going to have a baby with DS, that it was going to be me. I never gave it too much thought then. And it didn’t feel as though someone in my family (or myself) was going to have a baby with DS, just that if someone did, that for some reason, it would be me. It is very interesting to think back on that now. As here I am, the one member of the family with a baby with DS. I am a very spiritual person, so I definitely can see that this was the spirit talking to me. But even if you are not a religious person, I think anyone could see the irony in this situation. Simply amazing how things work out sometimes!

We love that little girl, whom just happens to have DS. Todd and I are forever changed by simply having her. Immediately we became better people. Not that we weren’t before – just better now! We have Regan and her awesomeness to thank for that! We believe that the world needs more people with DS, not fewer! More of the kind of people who can only see the good – exactly what we all should strive for!

2 Months & Going Strong

At 2 months old Regan had her first Early Steps evaluation. (This is for kids that have a developmental delay, or a condition that may lead to a developmental delay.) So they played with her and checked to see how she responded to light, sound, movement, etc. And, she did great! She was right on track with normal development. And might I add that she was doing some things that were beyond her age. One proud momma here! (By the way I don’t think I have mentioned that my name is Brandy – just an FYI as you already know the husband and daughter’s names.) Early Steps was not able to offer any therapies to Regan at this point because she did so well. Kind of a Catch 22 – she is doing well and that is great. But, we don’t want her to fall behind either. So I asked them if they would be willing to send an Early Interventionist to our home just once a month to check on Regan, just to see how she is doing. That way if there is one area that she is falling behind in, we could start working on that. They agreed!

Early Steps gave us some ideas of things that we can do to help keep Regan on track with her development, as well as things to help increase her muscle tone. (Babies with DS are generally born with low muscle tone. Regan’s is a little low compared to a baby without DS, but is pretty good for a baby with DS.) So we have been giving her tummy time to help strengthen her neck and core muscles. (Her neck and tummy muscles seem to be her weakest.) She tolerates tummy time for about 5-10 minutes and then she is done. I hear that is pretty good though! We have definitely seen an improvement in her being able to control her head. She isn’t there yet – but definitely making good progress! But the best thing we see – is the effort she gives it. She is always trying, and we couln’t ask for more than that.

During this month she has been smiling and laughing a ton! If I am having a rough day for whatever reason – that little smile monster can fix it in a hurry! Seriously – it is the best thing ever! I love having this awesome little girl in my life!

“We are not disabled by our disabilites, we are enabled by our abilities.”

The Bonus Chromosome

Determining the best way to tell everyone close to us was a difficult decision. Especially considering the majority of our family is not close by. We struggled with telling people over the phone, but in a lot of cases there just wasn’t another option. Everyone was very receptive and accepting of our little bundle of joy. And that definitely made things a little better. I know it was probably a huge shock to everyone, as it definitely was to us. I remember during a prenatal appointment where I was offered to have the genetic testing done, I was told that the odds of having a baby with Down syndrome at my age was 1 in 900. Not very likely, to say the least. But..here we are. I guess someone has to be the 1.

When she was first born, we looked at her and thought, “she’s perfect.” And we still feel that way today. I mean….look at that adorable little girl totally rockin’ that leopard print dress……what’s not to love? I wouldn’t change her…..she lights up my day. I might change the world around her though!

For those of you that may not know exactly what DS is, here is a brief synopsis:

Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. In most cases of Down syndrome, a child gets an extra chromosome 21 — for a total of 47 chromosomes instead of 46. It’s this extra genetic material that causes the physical features and developmental delays associated with DS. No one knows why DS occurs and there’s no way to prevent the chromosomal error that causes it.

We have actually started describing Regan’s genetic makeup as half of mommy (the first set of 23 chromosomes), half of daddy (the second set of 23 chromosomes), and a cherry on top (that bonus chromosome)!

We have wondered if there is something in the genetic makeup of myself or Todd that caused this to carry over to Regan. But, not the case. We are not carriers for that extra genetic material. So our particular situation is the “chance” occurrance. Well, at least that is what the medical world calls it. I call it God’s plan.

“My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I’m no different
His love knows no bounds
It’s those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I’ve chosen
Will help me get started
For I’m one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I’ll do it as you do
But at my own pace”

Family Photos & A Trip To Holland

 

 

 

 

 

 

Regan is 6 days old in these photos. Something changed for me the day that these pictures were taken. It was as if God were whispering in my ear – this is your daughter, and she is a gift. And that is how I see her. I don’t see DS, I see a beautiful, happy little baby girl. I see my daughter. And I love her so much, and could not imagine my life without her.

We accept, and love this little girl exactly the way she was given to us. But sometimes still struggle with letting go of the ideas we may have had in our heads prior to having her, of what our life would be like. Another mom in a similar circumstance described these emotions well.

WELCOME TO HOLLAND
by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

 The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

I definitely could not describe this feeling any better! I mean….she nailed it! I HAD to share this. So many people/messages/stories have helped me cope, and become reassured that everything is going to be alright. This story was definitely one of them. My goal is that this blog that I am currently writing, will help someone else someday. (Or hopefully many someones!) But even if it just opens the eyes of one person – it was worth it!

Regan is an amazing little girl, as are each and every baby that is created. And each one has a purpose here. That purpose may not be to become the best lawyer, or the fastest runner. But maybe just to give love unconditionally, and show the real meaning of life. I am confident that Regan is going to do that – and be dang good at it. Anything else that she does – well that is just a bonus!

“God does not make mistakes, or have accidents. He does things on purpose which may not fit into our own personal agendas. But when looked at in retrospect are far better than anything our agendas have to offer. Our baby girl is a blessing, a blessing wrapped in an unexpected package.”

Trisomy 21

Waiting for the genetic test to come back was a very long and painful process. We had some medical staff saying it was likely, and some saying they didn’t see it. I think this made it more difficult for us because we would hold on very tightly to the idea that Regan was going to be just fine. Then the results came in – Trisomy 21 confirmed. It was a very bittersweet moment. We felt overwhelmed about what might be ahead, unsure of what this would mean for us. But a part of us also felt relieved that now we knew, and that awful waiting part was over.

We were given some generals about DS, but as each child is different, there really isn’t a way of knowing what Regan’s life will hold. Only she will unfold that story for us. We worried…..how would others treat her? What types of things will she understand, and what will she not? What medical issues are we looking at? How will we afford her care? There were so many questions.

Todd and I had some rough days, but the good days outnumbered them. With each day that passed we became more comfortable with her diagnosis, and it would get a little easier. Worries were still there….but they became less encompassing as time went by. Seeing our baby girl smile at us could take all of that away in a hurry. Quickly we came to the understanding that this is the little girl that we are meant to love and care for. And she is the little girl meant to bring joy and a new wonderful outlook to us, and everyone around her.

I did not have the prenatal testing done to detect any genetic condition, and I am glad I didn’t. Not that I am personally against the testing; I think each individual should choose whether knowing prenatally or at birth is best. I do however disagree with 90% of the population that does not see the value in a child that may not have the “normal” label – whatever that is. For a small second I feel sad for those parents and what they missed out on. That child would have touched their lives in amazing ways that they will never know. But mostly I wish that this special child could have been given a chance. The same chance my child is going to have. Life. And a happy and successful one if Todd and I have anything to say about it.

Actually……….we do have a say in this. The one thing I have heard over and over from medical professionals, as well as parents of children with DS is that, the more love and encouragement you give your child, the more your child can accomplish. And you can be sure that we are going to give her everything she needs to be a happy successful young lady! And I am so excited to watch her grow in that journey.

I am sure there will be some tough times ahead. The struggle I have most often is thinking, “If 90% of the population doesn’t want to keep their own child that may have Down syndrome, then why would they be kind to mine?”. But I can’t think like that, or I will drive myself nuts! I know Regan’s value as a person, Todd knows it, our family and friends know it, and most importantly, God knows it. And this is the path that he has laid out for us. This path we accept.

“God does not necessarily choose the qualified, but He will qualify the chosen.”

Inspiration

Before I continue on with my story, I wanted to mention something that I would love to do. After each post about my lovely little Regan, I will add an inspirational quote or image regarding the amazing ABILITIES of people with Down syndrome. (I will list where the quote/image came from if I know – but most are simple Facebook posts!) I want to help raise awareness, and to let others know, that it is ok to have a baby with Down syndrome. Don’t be afraid….they are awesome!  And adorable…..

Regan’s Birth

On June 14th, 2012 our beautiful Regan Alexis was born. She weighed 6lb. 15oz, and was 20 inches long. This was the most amazing moment in the lives of my husband, Todd, and I. We were so ridiculously excited to meet our new daughter! And she was absolutely perfect! A couple of hours after she was born we had a little bit of a scare. Regan turned a little blue, and felt cold. We asked some nurses to come in and check on her, and they came running into the room. She was struggling to breathe, and the nurses thought they heard a heart murmur. They took her to a transition area to monitor her, and a couple of hours later, she had another episode with her breathing. At this point they sent her to the NICU (Neonatal Intensive Care Unit). I was then able to go see her, and was so saddened by what I saw. Little Regan was hooked up to every machine thinkable. She had a feeding tube in her mouth, oxygen in her nose, an IV in her head, a heart monitor on her chest, and was under a heat lamp to help regulate her body temperature. It was difficult to see her like that, but I was happy to be there with her so she wasn’t alone. I asked the nurse, “So what are we looking at here?”. And then came the words that would forever change our life. The nurse said, “Your baby may have Down syndrome.”.

Our whole world went a little numb. As a new parent, you never imagine that you are going to hear something like that. Especially not after only a few hours of having your child. I felt lost and confused, and had no idea what to think. And in all honesty, we really didn’t have much time to think, because there was test after test to be performed, and so we tried to focus on getting Regan off all those machines, so we could take her home. It could be a week or two before we would know for sure what the genetic test would show. So we held out hope.

The first bit of good news came in within the next hour or so. They sent Regan to have an echocardiagram to check on her heart – and thankfully – no heart defect. Whew…. a little weight off the shoulders. The next day she was regulating her own body temperature and was off the heat lamp. The day after that – no more oxygen. So we asked the nurse if they could take out the feeding tube and let us try to feed her with a bottle. She got the go ahead from the doctor, but they told us not to expect much. (This is likely because they suspected DS (Down syndrome) and that most babies with DS have trouble feeding.) Well…..little Regan sucked that first bottle down like a little champ! We were so proud! And she had no problem with every bottle following and did not have to go back on the feeding tube. More bullets dodged! She is doing so well, that on the 4th day the only things left are phototherapy to treat her jaundice, and the need to keep her on her antibiotics for a few more days just to make sure she didn’t have any kind of infection. And…she didn’t. So our little girl was coming home on day 6! Sooooo excited there really are not words!

But…..there still was that pesky genetics test that they reminded us about daily, often several times a day when a new nurse or doctor came on shift. (We got really tired of hearing, “You know your baby might have DS right?”.) YES, we know……you guys have told us like a million times, can we just enjoy our little angel, and be happy that she is doing so well and is healthy. Oh and by the way, she is doing so well that you are letting us take her home. Or, do we have to remind YOU of that! Sorry…..a little bitter about all that! Stay tuned, more to come…..