We Had Tickets to Disney, but We’ve Been Re-Routed to Holland

Yep, from what I hear, we will not be going to Disney. We have been re-routed to Holland, I’ve been told.

What a shock.

We thought everything was going to be perfect.

But we found out last Thursday, January 26th, that everything isn’t going to be perfect.
At 15 weeks pregnant, we found out our baby boy has Down Syndrome.

Do I know what is in store for us in Holland?

Nope.

But I do know that it will be okay.
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.
The Testing

We were offered extra testing this time around since I am old over the age of 35. (I’m only 36!) We started this testing at 13 weeks pregnant. The first set of tests was blood work and the NT Scan. (The NT test uses ultrasound to measure the clear (translucent) space in the tissue at the back of your developing baby’s neck. Babies with abnormalities tend to accumulate more fluid at the back of their neck during the first trimester, causing this clear space to be larger than average.)  The NT Scan did not look good. We knew then, that the test could be wrong or… we could be having a baby with Down Syndrome.

Mike and I talked and talked about it – that’s practically all we talked about. We both were disappointed, but we both have worked with Down Syndrome kids so we know a little bit more than the average person. We kept saying, “it will be okay, we can do this. But the test is probably wrong anyway.”

Then the following week I got a phone call from our doctor with the blood results. Now it gets worse. We were given a 1 out of 5 chance of our baby having Down Syndrome. Now it gets scarier. I did not tell Mike of this phone call. We had a ultrasound scheduled the following week with a high risk doctor along with an amniocentesis. I figured it was ok to wait for that.
January 25th came and we had the ultrasound with the high risk doctor. When the tech was done, I stayed on the table, belly exposed… waiting to meet the doctor. His news was not good. Again, it looked like our little boy has Down Syndrome… so, while I was laying there, belly exposed, we went ahead with the amniocentesis on the spot.
At this point, I pretty much assumed that the baby had Downs. I trusted the doctor, and his reasoning.
I think I’ve been holding my breath ever since that day.
I feel like I’m waiting for that point in time when I can relax and let it out.

The Phone Call

We received a phone call the next day that confirmed the Down Syndrome.
It was late afternoon. Mike was here sitting across from me when the phone rang. I told him, “It’s the doctor”. I picked up the phone and it was an instant answer. Baby has Downs.
I instantly looked at Mike and said, “baby has Downs”.
I was numb. I don’t think I even heard the rest of the conversation from the doctor. I got up and went to sit on my bed. There were still kids everywhere around here. I couldn’t think. I couldn’t hear. I couldn’t breathe.

Thank God my older kids were home to watch the little ones (Gracie and my daycare kids).

I sat on the bed. Mike came right behind me and sat next to me. I put the phone on speaker. He was calm. About 30 seconds later, tears were running down my face. I wasn’t crying. I was calm. Still on the phone holding a conversation, I was calm. I hung up the phone and Mike said, “are you okay?” and I lost it. I just said, “no” and I cried as he held me.

I cried and and cried. And so did he. He kept saying, “It’s going to be okay.”

The first thing I said is, “I’m so sorry. It wasn’t supposed to be like this. After all you’ve been through, I was supposed to give you perfect babies. It’s not supposed to be like this.”
Of course he assured me it wasn’t my fault, but it just didn’t matter to me. (For those of you who do not know, Mike lost his 3.5 year old daughter to a heart condition.) I wanted to be the one to give him perfect babies that he could enjoy raising, with no complications to worry about.

Whirlwind of Emotions

At that moment, we were numb. Completely numb.

Instantly, we both lost our excitement for this pregnancy.

It was gone.

What was the point?

We spent the rest of the night talking and crying and assuring each other that this was going to be fine.

Mike called in sick the next day to stay home with me. We spend the day talking and crying again along with getting online and doing a ton of researching to answer our questions.
So – what are we thinking?

We are being punished by God. Certainly we must have done something wrong, so we are being punished. And all of our mistakes keep flashing before us.

Logically, we know this isn’t the case. But our minds keep telling us that it is. In fact, that is all I keep thinking. I keep going over everything in my mind, recalling all of my faults. Do I take advantage of raising my healthy kids? Do I take motherhood for granted, so I need to be taught a lesson?

Feelings?

Grief.

More than grief. What word is worse than grief? We feel like we’ve lost a child. And we have. We’ve lost the child we thought we were having. We are also losing the life we are used to, the only way of life we have ever known. The “easy” life.
Guilt

We feel guilty that we have to try to be excited for this little baby growing inside of me. Not all of the time. But there are times when we do lose the excitement and we have to remember seeing that 3D ultrasound just to get it back. We have to remember that when he comes into this world, all we will want to do is hold him and kiss him. But forcing ourselves to think this way makes us feel so much guilt.

Anger

There was a point within the past week that I got extremely angry at people. Everyone came out of the woodwork to send me messages. To tell me how sorry they were. At first I felt appreciation. And I wasn’t angry about my friends messaging me. But later, I got angry at the opposite. It’s like when you die – everyone who ever hated you shows up to your funeral to “offer their condolences” – BUT WHY?!? They hated you in real life, but now that you are dead, they are going to pretend to miss you?!? Same thing happened this past week to me. Everyone who hates me sent me messages of ‘support’ and it just made me mad. Nothing like shaking hands with the devil. In fact, I was arguing with someone just last week and she basically told me I was a crappy parent/daycare provider and told me that she feels sorry for my kids. Then 2 days later she is feeling sorry for me and saying, ‘they are in my thoughts’. Why waste your time? Save your energy!

Then there is another feeling.

I don’t know how to describe it though. It’s not ‘embarrassment’… it’s not ‘shame’… I don’t know what it is. It’s the finger pointing I’ve had to put up with. So so so many people expressed their feelings that we ‘had enough kids’ and should not have any more. They thought we were stupid. They sat in their little groups gossiping about how crazy I was. So now what? Now what do they think? Are they thinking, “They deserve this. They had too many kids and they shouldn’t have had any more, so this is their tough luck”. Or “haha, they get what they deserve.” Just like all the judgmental people who have judged the Duggars. And why do I even care what they think? They are, by far, are the least important in my eyes. Maybe this can be categorized along with the anger?

So Now What?

The day after we received this news, I searched Facebook and found a Down Syndrome group. I joined, and instantly received tons and tons of support. I got tons of friend requests and tons of messages from new friends explaining their situation and offering their support. And I needed it. I needed support from people who have gone though what I was going through. Mom’s who could tell me what a blessing it is to have a Down Syndrome baby.

They’ve sent me the most perfect personal blogs to follow, the perfect sites to read up on and some of the most perfect poems to lift me up when I am down.
HEAVEN’S VERY SPECIAL CHILD
A meeting was held quite far from Earth!
It’s time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he’ll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won’t adapt,
And he’ll be known as handicapped.
So let’s be careful where he’s sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they’re asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they’ll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN’S VERY SPECIAL CHILD.
by Edna Massionilla
December 1981
The Optomist- newsletter for PROUD
Parents Regional Outreach for Understanding Down’s Inc.

So the Lord chose me?

Me?

He actually chose me and Mike to parent this little boy and love him?

This gives me comfort. This makes me believe that I can do this. I can be a good mother for this baby boy, and I can give him what he needs.

Then there is this one:
DOWN SYNDROME CREED
May 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 heaven
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 my standards
That man has imparted
But this family I have chosen
Will help me get started
For I am 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 as you do
But at my own pace.
 
The part that hit me and knocked me off my feet – “To teach you to love
As God in heaven
”. Oh wow. This is going to teach me to love in a way that I have not experienced before. It’s a different kind of unconditional love that I know now. And that is amazing.

Exhaustion

And now the exhaustion is setting in.
I am so tired of thinking.
I am so tired of crying.
I am so tired of researching.
I am so tired of wondering so many different things that I will not know until I have him.
I am so tired of telling the same story a million times to each new person that finds out.
Can I just skip all of these emotions? Maybe go to sleep… and wake up in labor and ready to hold my little boy. As it’s been pointed out… my womb is hugging him right now:

15w4d.3D.1.28.12 011

And last-but-not-least…

Gratitude

I want to thank my new friends. My new Down Syndrome Mama Friends. I can not even begin to explain how much they have helped me in the past 6 days. I really do not think I would be in the mental state that I am, if it were not for them. Their stories, their photos, their advise has been such a blessing.

Thank you.

From the bottom of my heart, thank you.

And to everyone else…

Thanks for ‘listening’.


UPDATE: 5/11/2012

I have noticed that this post gets many views per week so I thought it might be a good idea to post a little update.

I guess I just wanted to drop in and let everyone know how great things are going.

It took Mike and I about a week to “get over” this shock of finding out we were going to be parents of a baby boy with Down Syndrome. And it’s not that we are “over it”, but we’ve been able to learn so much in the last 4 months that we feel good about this now. We are excited about this pregnancy.
Finding this diagnosis out early has helped us make major decisions that we would not have been able to make, if we had not known.

For starters, we did find out that our baby has a few heart issues that are common issues in Down Syndrome babies. Our baby boy also has a brain issue that has become more under control over the last 4 months. At first, we were looking at three separate surgeries. We are now down to only one, praise God! However, finding out early about these potential surgeries has helped us make wiser decisions. For example, we chose to move. We moved into a home that was approximately $700 cheaper. This way, if I can not work (daycare) while our baby has surgeries and spends extended time in the NICU, we can afford our bills on my husbands income alone. If we had not known about these issues, we would have a very hard time keeping a roof over our heads. The town we moved to also has a fantastic school (pre K)program for Down Syndrome children starting at age 3. This is where Mike and I have met and worked with DS kids. This gives me a peace also, being familiar with our location, the school and the help.

UPDATE: 6/27/2012

In the beginning of this post I wrote, “We thought everything was going to be perfect. But we found out last Thursday, January 26th, that everything isn’t going to be perfect.” – Oh my goodness was I wrong.

So so wrong… everything is sooo perfect, I couldn’t ask for anything more right now.
We had our miracle baby, Jack, on 6/21/2012. I have to say… nothing that I’ve written above matters now. Our Baby Jack is the best thing that has happened in our lives. He’s taken away all of our doubts and fears. I wish that I could have skipped the whole pregnancy and skipped ahead to now. It’s perfect now. We love him so so much. I wish I could take away these feelings that we all feel when we find out our child will have Down Syndrome, because it does not matter.

DownSyndrome.1
Down Syndrome BlessingDown Syndrome BlessingDown Syndrome BlessingDown Syndrome Blessing
Down Syndrome Blessing
Down Syndrome BlessingDown Syndrome BlessingDown Syndrome Blessing

I wish I could explain how in love I am with my Baby Jack.

I have no words.

He’s perfect.

So so perfect!

October 2012

I feel like sharing a few more photos of how perfect my little guy is:

Down Syndrome BlessingDown Syndrome BlessingDown Syndrome BlessingDown Syndrome BlessingDown Syndrome Blessing
Down Syndrome Blessing
Down Syndrome Blessing
Down Syndrome Blessing
Down Syndrome Blessing

Our Baby Jack is such a blessing! We are so so in love with him. Mike keeps baby talking to him saying, “I wish we could have 5 more like you!” haha… it’s true, we would take him a million times over again! He’s the sweetest thing ever!

If you’d like to read about our pregnancy with Jack, feel free to visit my Pregnancy Journal. This is a weekly meme I participated in where I gave all of our weekly updates. It walks through all of our medical issues, doctor appointments, up’s and down’s and is always kept current.

Baby Jack: 7 Months Old/January 2013:
 
Down Syndrome 7 Months Old
 
Down Syndrome 7 Months Old
 
Down Syndrome 7 Months Old
 
Photo: Boys watching football...
 
Down Syndrome 7 Months Old
 
Down Syndrome 7 Months Old
 
Down Syndrome 7 Months Old
 
Down Syndrome 7 Months Old
 
This little guy sure is loved! 


Again, I’d like to thank all of my new Down Syndrome friends for helping me through this time. If it wasn’t for all of you, this would not have been so easy. Also, thank you to my family who took our ‘news’ and reacted exactly how I needed you to react. It has made this much easier on us!


Comments

  1. Your honesty and bravery in this post is remarkable. I’m sorry that you’ve “been re-routed to Holland”. My thoughts and prayers are with you and your family.

    • With all due respect Shelly, why are you saying you are sorry Danielle has been re-routed to Holland? I have a little boy who has Ds and I live in Holland every day. I wouldn’t change a thing about my son – I wouldn’t take away that extra chromosome even if I could! I had no idea how much I wanted a child w/ Ds until I had Caden. I had no idea why people would put their name on a waiting list to adopt babies with Ds until I had Caden. I had no idea how absolutely beautiful people are who have Ds until I had Caden. I had not idea why God would give me a baby w/ Ds until I had Caden. He was put on this earth to teach me and you and everyone else about Down syndrome!! It’s not scary, it’s not bad, it’s not something to be sorry about. Danielle isn’t there yet but she will be… she will look back and realize how absolutely LUCKY she is to have been given such a wonderful gift from God. Trust me! I’ve been given that same gift from God so please don’t be sorry but rather rejoice in her blessing!! :) Danielle – CONGRATULATIONS AND WELCOME TO THE T21 CLUB!!! Hugs to you….

    • Anonymous says:

      could not agree more there is nothing to be sorry for.yes it is a shock at first but you will realize that your child is your child no matter what the diagnosis is.everybody told me that she is a gift from god and i truly beleive that.she has brought me sooooooooooooooooooooooo much joy and happiness to my life she puts a smile on my face every day.you will look back in a year from now and ask yourself what was i so worried about because i would not trade my daughter for anything.CONGRATULATIONS on having the best kid in the world!

    • Shelly, I think what you’re saying sorry for is that the direction her flight was taking was re-routed, not sorry that she is actually IN Holland. I get it.

    • Yes, it is okay you guys. Lots of people don’t know WHAT to say, and that is okay. Just exactly like I never would have known what to say either, before I had my daughter and then went on to adopt another. I feel like we have to take these comments with a grain of salt … people often mean well. :) They just don’t always know how to say it.

      I remember feeling weird about people telling me congrats!! … and yet feeling weird about people telling me they were sorry. Nothing makes you happy when you are in the middle of grief like this. And Danielle’s post is full of honest, raw grief. Our natural response is to feel bad for what that person is going through, yet feel blessed to have this baby coming.

      And that is why we educate, educate and educate some more. :) Because this baby is going to change sooo many lives … you just wait and see.

  2. God has a lot of faith in you. He gives you what you can handle. He is giving you this beautiful boy that needs extra love. Other people could not handle it and that is why they don’t have a downs baby. You are a strong women. Bless you and your family!

  3. it is great that you found a support group. Many children with down syndrome are very smart and some I’ve seen are the happiest in the world, and it sounds like you can give him a very loving home and all the support you can. Just remember that you aren’t alone. I do think that things happen for a reason and that parents of special needs children are blessed just the same. I am a single mom of an almost 5 year old boy who is autistic and I refuse to live in Holland, in fact, we are going to Disneyland for his birthday on the 25th!! It is his most favorite place in the whole world, and he is my world too! I wish you and your family the best.

  4. I HAVE BEEN THERE!!!! EXACTLY where you are right now, except I didn’t get the prenatal diagnosis……… I didn’t know until my baby was born. You are sooooo lucky!!!!! All these days that you have spent grieving and “not enjoying”, I lost too, only it was his first few days of life that I should have been sooooo overly excited about :( You have time to prepare and grieve and by the time your little miracle gets here, you will be past all that!!!
    And what that person told you about a love that you have never experienced…..that is true!!! It’s so incredible! You are going to look back at that dreaded phone call and these past few days and you are going to laugh when you realize that it was all for nothing. YOU ARE LUCKY MAMA, you have no idea!!! Not everyone gets chosen for this job! If I had to do it all over again, the only thing that I would change is WHEN I found out! I love the fact that my little man has that LOVE chromosome and would not change that for a “perfect” baby ever!!! CONGRATULATIONS on your baby boy!!! Can’t wait to see pictures and follow your journey :-) Oh, and I almost forgot to mention, your older children…… have you told them? I have 6 older ones and I was sooo scared that they would be embarassed of their little brother….. well, they sure proved me wrong!!! They love him probably MORE than they should. LOL and they are his biggest advocates without me even asking them too. We have all become better people!

    • I agree with EVERYTHING you said!!! We did get the prenatal diagnosis so we had time to grieve and it is a grieving process… you go thru anger, depression, denial, etc but then by the time the baby arrives you are READY and you realize the Ds doesn’t matter. The first time I held Caden he looked up at me with his beautiful blue eyes and begged me to look past the Ds. He begged me to love him despite the Ds. And at that moment I knew. I knew I would love him with my whole being from that moment forever and always. He was my baby, he needed me, and I needed him.

      I am glad we found out ahead of time. It wasn’t easy those first few months because we didn’t have our little guy to hold and snuggle and love but it was time we had to learn and talk to others and discover that we were going to be alright…. more than alright…. we learned we were going to be GREAT. And we were right… life is AWESOME with our little Caden in it. He was put on this earth to teach us and everyone around our family about Ds. And he has done that! He is amazing and we wouldn’t take away that extra chromosome even if we could. He is perfect the way he is!! Hugs to you and your little man!
      ~Pam C (proud member of the T21 Club)

  5. Oh,and one more thing……..(sorry) that part about you worrying that your life is going to change…..you are right, the life that you are used to is about to get 10 times better!! ((hugs from Texas)) don’t hesitate to email me or facebook me if you ever need anything!

  6. As a Special Education teacher, working closely with Down’s students, I admire and salute every parent who has a Special Needs child. I love each of my students and the amazing abilities they posses and share with me each and every day.
    It sounds like your little boy is coming to a warm, loving and PERFECT home.
    Thoughts and prayers for you, this post must have been a difficult one.

  7. I love you danielle.

  8. I love you danielle.

  9. I love you danielle.

  10. I am glad you found such a supportive group. May God guide you and may you find joy in your blessing when he arrives, for that is what every child is – a blessing from God.

  11. Always remember that you are never alone. There isn’t an emotion that you can experience about this that all of the rest of us haven’t experienced as well….We all will stand behind you and validate whatever is in your heart at any given moment, because we have been there as well.
    Its not the journey you planned. Its not the journey any of us planned starting out. But it’s sincerely going to be BETTER than the plan you had. :)
    Welcome to the family.

  12. Stacey Eby says:

    Holland is pretty darn amazing. Seriously. You are an amazing mom, and even though you don’t feel as strong as He obviously thinks you are….but I promise, you are. This little boy is the miracle that you never knew you neededz. Hugs and love!

    Stacey

  13. Danielle, while I cannot totally speak from experience I was in a similar situation in March with Maddoc. We were told he had Williams Syndrome. I was absolutely a wreck not knowing what to expect in the future… Until we met the geneticist. She was such a wonderful person and made me feel so comforted and hopeful. My favorite words from her were “Remember, you have a baby, not a syndrome. He is still Maddoc.” M’s test results for WS came back negative, and while we are still trying to figure out what he may have, I will never forget how much better she made me feel. I am glad you have found a connection with other moms and I hope that only grows, especially with your doctors :) The few children I know with DS are adorable little angels! He is a blessing you have been chosen to receive because you are special :) Hugs mama!

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  15. This little baby boy is so blessed to have you and your husband as parents! I have a child with special needs and she is one of the most inspiring people I know! I am not saying it has been easy but it has been very rewarding and I would not trade it our lives for anything. I am sad that you are faced with this, but I am praying that with some of the sadness comes a tremendous amount of joy! I know you have a big fan club pulling for you! Hugs!

  16. I hope this isn’t the wrong thing to say but congratulations on your very, very special blessing. You are a special Mama for God to have chosen you to be this little boy’s Mommy. *hugs*

  17. I went through the same feelings with Brooke, it’s totally normal…just keep breathing and putting one foot in front of the other…
    You can do this…it may not be the same as raising your other kids, but so what? Different is not negative…
    We are here and you can always email me or message me if you have a question or a vent or if you still need to cry…there’s a lot of emotions right now, don’t feel like you need to be over it already…take your time…adjust…breathe

  18. You’re going to be an amazing mother to your little baby.

  19. Well, now you’ve made me cry. What a way God has of giving us exactly what we need. I think that you and your family are the perfect family to receive this special gift from God. Your feelings are all normal and I certainly don’t judge you for any of them. Do you follow Carrie with Children. She has a Downs little girl, Molly. Also, check out the Albert Pujols Foundation. His little girl has Downs and I know they offer a lot of support to families. While Downs children can be challenging, they are also funny and sweet and so loving. They see the good in people. I believe that even with all of the other challenges that people have, Downs children are extra extra special.

    Many prayers for you,
    april

  20. What a beautiful post. You’ve gone through so many emotions in the last week and I appreciate how you can express yourself.

  21. Please…if you haven’t already, read “Welcome to Holland, Part 2″.

    Welcome to Holland (Part 2)” by Anonymous

    I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I’d planned.

    I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.

    Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land.

    I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn’t so bad.

    I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I’ve wondered what life would have been like if I’d landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

    Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift.

    I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its’ tulips, windmills and Rembrandts.

    I have come to love Holland and call it Home.

    I have become a world traveler and discovered that it doesn’t matter where you land. What’s more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.
    Yes, over a decade ago I landed in a place I hadn’t planned. Yet I am thankful, for this destination has been richer than I could have imagined!

  22. (saw your post on fb)
    When we adopted our little guy with Down syndrome, I asked for some advice from a stranger who I knew had a child with Ds as well. I’ll never forget what she said… “You’ll never regret it.” Max is almost 3 now. And she was right. I have never regretted adopting him. He is so amazing. I didn’t have those feelings of grieving that most mom’s do when they find out their baby has Ds. I chose it. And I would choose it all over again! Your feelings are so normal. And the Ds community is amazing. Full of support! Ask us anything. Most of all, congratulations on your little one. Really!
    http://www.twodogsandafish.blogspot.com/

  23. And my favorite Ds quote:
    “We often think that having a child with T21 {Ds} is like gaining membership to a secret club, a club you never knew you wanted to be in or even existed, but once you are in, you are so thankful that you were chosen.”
    Nicole Maher {fellow blogger}

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  25. I agree with Not a Perfect Mom (love that name). If there is one thing I would tell a parent with a brand new diagnosis, it would be “It’s OK to grieve.” And let it take as long as it takes.

    It has been a process of adjusting and learning (our little boy with Down syndrome is six now) and will continue to be. I am a better person for knowing him. I like myself better than I did before he taught me how to see people. His challenges (and/or our challenges with him) also bring out the worst in me as a parent. :) But I know I will be a better person for struggling through my weaknesses and letting God make them (microstep by microstep) into strengths. I am glad you already found our group to lean on. You may find, as I have, that there are many people (neighbors, friends, family) not only willing, but wanting, to help you (like when I need someone to call because I’m about to go crazy, or already have). I am learning to lean on the Lord more, hour by hour, and sometimes even minute by minute.

    We’re each sent to earth with our own package of strengths and weakness. And, with each challenge, the Lord gives compensatory blessings. That holds true for your new little one, and for you. Wishing you and your family the very very best.

  26. You are not being punished by God. You have been blessed by him. You are right to feel everything you are feeling. While I knew my son had Down syndrome, I had secretly hope that when he was born, it would all have been a mistake. Of course it was’nt, and we have been blessed to have such a wonderful soul join our family. It may take a while but you will feel blessed.

  27. Danielle,

    I also knew prenatally and everything you have said here brings back memories… Those initial feelings are so raw and powerful. And all of us “talking you down” sound like blah blah blah :-) Take your time and let all these feelings run their course.

    Thank you so much for starting a blog and inviting us along on your pregnancy. It is so exciting! {{hugs}}

  28. Learning that your baby is “not what you expected” is always a hard thing. Whether that be a diagnosis prenatally, at birth, or something happening to your child throughout his life as s/he grows up. There are no guarantees in life, and I found that after adjusting to my son’s Ds diagnosis after birth (he was born 6/5/10) – I am SO THANKFUL that he is our son. He is amazing and is showing the world that Down syndrome is not to be feared. Check out more about him and his life so far (he is 20 months old) at http://blog.gretchenmather.com or on Twitter @Julians_Journey . can’t wait to welcome your boy into the world with JOY! You are going to go through many emotions between now and when he is born. But one thing that I believe you will be thankful for is that you were ablet o sort through your emotions NOW and be able to be truly JOYOUS on his birthday instead of coping with shock/surprising news.

  29. Thank you for sharing this beautiful post – you are going to love Holland!

  30. Just wanted to say one more time…Welcome To Holland…from a mommy who has been here 5 years…it keeps becomming more beautiful!

  31. Love this post & I have so been there. I grieved, I bawled, I went home and tiled the bathroom because I had to stay busy & I mostly tried to pray it away! It seems so hard and such a weight on your shoulders at the time, but when he arrives, oh how perfect he will be and God will lift that burden from you. You will gain a new perspective on life I promise you that :) You will celebrate on his birthday so very much! My only advice is your friends, family, community – they don’t know how to act or what to say & you will get pity & you will get the I’m sorries or the people avoiding you because they have an issue of how to act around you. Put it out there how you expect them to feel – don’t let them pity you – let it be known that you are in love with him no.matter.what & the people in your life will rise to your expectations :) They will adore him too! If you ever need to vent – message me – I’m always here too :)

  32. What a well written post. So open and honest. I liked the story from Emily. I think your feelings would be my feelings. How can you not be disappointed, angry and mad.
    That is a natural response. I also know from my experience with woman who have buried their babies that they would feel so blessed to have downs baby. There is a part of me that always searches for the “things could be worse.” I say these things with only love in my heart for what you are going through. Often in life when we want to get angry with God we realize that He knows what is best for us. He knows that you and Mike will be the perfect parents for this little boy. ((HUGS))

  33. I know this isn’t the trip you and your family were expecting, but I imagine the fun and beauty you’ll find in “Holland” will be amazing! God will equip you!

  34. God doesn’t give us more than we can handle. You are so strong and I know that you and Mike will be amazing parents to that little boy!!

  35. You have lots of amazing comments on here, so I almost don’t want to add anything. But I’m going to! I want to send hugs, because I can only imagine how hard this is. I do believe that you have been chosen to be parents to a wonderful child who will change your world for the better. What a special job you have been given. I’m sure it won’t always be easy, but the rewards will be eternal.

  36. I am so glad to have “met” you through our shared journey! I know God will equip you with everything you need for your precious son! I can’t wait until he gets here! :)
    Thank you for being so open and honest in your thoughts!
    Praying for you and your family! :)

  37. Sending you hugs, sweet mama. God will not require you to run faster than you have strength! Your little boy will be such a precious spirit in your home, I’m sure. May the Lord bless your family!

  38. I’m not sure I have the right words to say, but I want you to know that if you need an ear to listen I’ll gladly do so. I can’t imagine the wealth of emotions you are going through right now. I think this little boy is going to change your life in amazing ways you might not even realize. I’ll be thinking and praying for you guys! xo

  39. I am truly sorry about your shocking news – but I know that you will be a great mother to your little baby and it will turn out to be a great blessing. Life is never going to be easy but continue to find support from the right people and try to ignore the ones that don’t support you like you need!

  40. Welcome to the club. We have designer genes and lots of love. Oh yes, CONGRATULATIONS on your pregnancy.

    This is our journey, if you are interested:
    http://downwitdat.blogspot.com

    -J.

  41. I LOVE this post!!! Congrats on your baby boy!!! My niece has Downs Syndrome and she is the BEST little girl in the world!!!

  42. Your life will still be perfect, you will see. <3

  43. You are so brave to write such a see through post. It was beautiful. I’m still so happy for you guys on your pregnancy. I’ve never been where you are, so I can’t know your feelings. I’m sure it is hard and more than you could ever express in words. I’m so glad you have found such wonderful support from families that are in the same place as you. I’m positive your son (and God) chose you as his parents because you are the PERFECT fit for him! Go through all the emotions you need to go through…

  44. We didn’t know our Ella Grace had Down syndrome until she was born. To say I was utterly devistated would be an understatment. I didn’t want this life, I didn’t want this life for her, the hardships etc. The first couple of months I just kept saying “I want my old life back.” Sometimes I look back at that time with a lot of regret, I feel bad for feeling those things. But the reality is that was part of my journey, and that is the way it happened. Your journey is just that, it’s YOUR journey. Don’t be afraid to feel and express all of the emotions involved!!! I will say that as I sit here 5 years later I am an incredibly blessed mom with two great kids!!

  45. Danielle – This post really hit close to home for me. My 19-month old daughter, Molly has Down syndrome. We didn’t find out until after she was born and I can totally understand the flood of emotions that you are going through. Please feel free to email me – Carrie at CarrieWithChildren dot com. I wrote a post on my blog about how I shared the news with friends and family and I even have her cute birth announcement on there too. I love sharing positive stories about our journey. And while it may be tough to think about right now – you are about to embark on the most rewarding and amazing journey! Sending you love and hugs! Hope to chat with yous! xoxoxo

  46. With this pregnancy, my doc asked us if we wanted to have the testing done (my husband had a Downs uncle who died in infancy—this was many, many years ago, of course, when those babies didn’t always live), and we said no. I wouldn’t be able to change it. It wouldn’t change whether or not we were having the baby. I’m prepared for any number of things happening with our perfect-in-my-head little girl, but it won’t make me love her or want her any less when she gets here. I’d rather deal with those things after I meet her and love her rather than worry myself for the rest of my pregnancy.

    Of course, we’ll see if this theory holds up once she gets here…

  47. Anonymous says:

    Congratulations!!! I am the parent of a 6 yo dd with DS. Truth is–It’s one of the best things that has ever happened to our family! Are there difficult days? Sure—There are difficult days with my other two (typical) children also. It’s called being a parent. Difficult days will come in the life of any parent, but I wouldn’t change a thing about my daughter. I also kinda feel sorry for people who will never get to experience the kind of unconditional love I get from her. And one more thing. I’ve heard so many people say to me that God only gives special children to special parents. This simply isn’t true. God gives special children to oridnary parents and gives them the strength and wisdom to handle it—IF we ask HIM for it. :)

  48. Congratulations!!! Welcome to Holland. We couldn’t imagine our 10-year old, Ricky, being anything else but the perfect little man that God intended him to be. He is so smart, funny and loving and has taught us so much in his short life. You will be amazed at how much you LOVE your son…I sometimes have to be careful not to play favorites as I have 4 other children including his twin sister! Our Ricky is the light of our lives and your son will be the light of yours too! Just enjoy the ride…it keeps getting better…

  49. Thank you for sharing your story with us. Hearing news like that must be tough…and you are so honest with your feelings about it. You have a beautiful family and it looks like you have a lot of support and love.

  50. Aranda Gibbs says:

    Thank you for sharing your story. And I agree it looks like you have a lot of support and that’s always a plus, plus your readers are always here for you!

    Arandamarie1992@yahoo.com

  51. Thank you for sharing. And I’m glad you’re with me, in Holland. xxo!

  52. I’m so glad you ended your post like you did because I was reading it, with the tears streaming down my face of course, and I was thinking the whole time that God chose you, and then I read your notes on “God punishing you” and I wanted to say to you, no, it’s the opposite, it’s so the opposite, and then you ended it like you did, and you already know. You’ve been trusted with a very special child and that’s a blessing.

    This is completely unrelated, and had a different outcome than yours, but with our second to last child, we had to go through all of the things you just did… though I balked at the amnio until late…and we went through so many of the emotions you described. I do relate. And I do send you and your husband so many hugs and wonderful thoughts.

  53. I’m still not sure- i would listen to the doctors. With my daughter- she came up positive- they sent us to the perinatal for testing- we just did the ultrasounds- what did they find- 2 cyst on her brain- WHAT- but guess what -they went away in about 4 weeks and she came out healthy and smart as can be. This time i skipped the -lets test the neck fluid- i mean every baby grows differently- none are alike. again my test came back positive 1 in 10 for downs…i’m not going to worry- like you said- GOD is going to give us the child he wants us to raise- HE knows what we can handle..i go for my preinatal ultrasound on the 19th but i will refuse the amino test…they told my friend she was not going to have a downs baby and she ended up having one, just goes to show you- you just never know until your little one gets here and then all those bad feeling will disappear when you see your little one- oh the joy you will be….

  54. Oh he's so CUTE! Congratulations! He was born on my son Peter's 6th birthday/Angelversary. I can really see the love and pride on your face in the pictures. Thank you for the updates. I'd missed the original blog entry and it was very uplifting to read through the whole process to the end. I've been through/am going through two more pregnancies since losing my son Peter and am

  55. Jack is truly precious and a gift from God!! I can only imagine the fear, hurt, anger that you went through in the beginning, but also know the mark he made on your lives once he arrived! You are truly blessed!!

  56. Oh, Danielle! I told you way back when you found out that little Jack would be a gift from God! He’s going to do wonderful things, you just wait! I wasn’t wrong back then, and I’m not wrong now. He’s already done wonderful things for all of us who know him through you. He’s very special. He’s love in human form. <3

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