My Unexpected Little Blessing

The surprise of a baby with Down syndrome – the story begins at the bottom of this page.

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!

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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.”

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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”

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Family Photos & A Trip To Holland

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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.”

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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.”

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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…..

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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.

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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…..

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