Many have asked how I am doing, I guess they mean as far as recovering from the c-section. I'm recovering well, the section was not fun and I don't want to do it again but the recovery has been good and I'm feeling (as far as my body goes) great!
But I want to be honest, I've always tried to be honest on my blog, every once in a while I feel sad. Not sad like I don't want to talk about it or like I'm depressed about it. I've known for over 5 months that Bennett would have Down syndrome and I handled it pretty well I think but now that he is here, it's real. And every time I think about it I get a little sad. I'm don't want him to have Down syndrome and there are parts of me that still think it's not fair. I hate that this is something we will have to live with and that this sweet baby will have to overcome challenges in his life and I don't want that for him. I think it's hard when you know what the future may hold- as far as delays and statistics verses with Ainsley and Harper I don't know so I just assume everything will be fine with them. How can I assume everything will be fine with Bennett when there are facts starring me in the face that he will be delayed and that he will be a little different from other children?
Now I'm not saying "what if, what if" I'm just saying I'm no superhuman here and I'm just a little sad, it's okay to be a little sad, right? I still love him more than anything but I just wish that things were different right now. I hope this doesn't show a lack in faith, it's not that I don't trust that God has a plan for us and I still feel Bennett will bring many blessings to our lives, it just makes me a little sad sometimes to know that he has Down syndrome. Maybe as time goes on, my feelings will change.
Adrienne
ReplyDeleteSue here Codys mom, I know how you feel I am going through the same feelings myself. Cody is six weeks old and has been home for 4. I love him so much and I just wish he did not have DS, that said it is what it is and like you I had time to prepare myself but I am still having these feelings. You know what we have to be easy on ourselves we are not superhuman and nobody expects us to be except maybe ourselves. We love our boys and I know this for sure and for right now I will feel these feelings and work thru them. Its a ajustment and its gonna take a while, your not alone ...........
Our foster baby has Ds. He is 9 months old now. Anthony had his heart repair at 3 months old. We got to bring him home from the hospital 3 weeks after he was born. Since then, he has gone to therapy weekly (speech, OT, PT) and is developing cognitively and otherwise just like children without Ds. He has even hit some milestones earlier than other babies we know.
ReplyDeleteIt is scary and sad to realize that he will have delays and not have all the same experiences that most of us get, but he has a fighting chance. The therapist is convinced that siblings play a huge role in this.
Bennett is so blessed to come to a family who loves him and is ready and prepared to help him achieve all that he is capable of and more.
I read an article on Parents.com yesterday. The author was discussing a support group for parents of children with Ds. She said there was a 30-year-old woman in the group who has Ds. The 30yo has a drivers license and a college degree! That sentence gave me a whole new ray of hope.
Adrienne,
ReplyDeleteI really do think things will change. I remember after I had Gage and they took a blood test to test for Down syndrome. It took about a week to come back and we kept just assuming he had Ds, but honestly, there was a part of me just hoping and praying the results would come back negative and we would be able to go on living a "normal" life. I felt so much love for Gage, but was nervous about the idea he had Down syndrome. But a year later now, my friend asked me the other day, "would you have it any other way?" My answer was able to be so honest and with a huge smile on my face that I would absolutely never have it any other way. There are those challenging days, and as a waitress I constantly see kids younger than him that are bigger and doing more things than he is, so I still have those "what if" moments, but I honestly wouldn't change anything about him. Ok, yes I would. His heart issues I would take away in an instant if I had the opportunity. I would take them onto myself if I could, but I am sure you know exactly how I am feeling with that, for sure. Know that your feelings are normal, not a lack of faith. I think you are doing fabulous.
Hang in there Adrienne. Everything will adjust and become "normal" to you. Ella is 14 months old and there are still times that I wish she wouldn't have to be so challenged in life but that doesn't mean that I don't love her just the way she is or want to change her. I think you have done great and as Bennett grows and starts touching people with his smile so much more than probably your other children did...you will be the proudest mama ever!!!
ReplyDeleteIt is perfectly acceptable and normal to feel this way!! Just b/c you knew ahead of time doesn't mean you should have it all figured out! Giant hugs! It will get better, even though it will not ever be the way you "wanted" it.
ReplyDeleteI hated it for so long but now am starting to realize that B’s Down syndrome has really shaped me and molded me into a stronger person. With more faith in God and more hope in people. So while I will always curse it b/c of the limitations and health issues it gives my son, I know that God has used it in such tremendous ways for His glory.
:)
It's been two years and I still feel a little sad sometimes. It's more than ok to feel a little sad sometimes. It's ok to feel a lot sad sometimes, too. Luckily for you, me, and the rest of us, the happy sooooooo outweighs the sad!
ReplyDeleteExcellent entry. There are those days and I call them 'Poor ME moments' as Sam knows no difference. If you step back and think of your other kids, I bet there was moments that you 'wished' things different...I know I do. They may not be as serious as our children with the designer genes, but there are still wonderments. I have come to really appreciate the word 'journey' because it so has been.
ReplyDeleteExcellent entry...I have to say I believe we all have these moments. In our house I refer to them as 'Poor ME moments' as Sam (18 months) knows no difference. Along with this though, I have stopped and thought about it, don't we have these moments with our other children that do not have the designer genes? I know I have wondered things different with them...may not be as serious as Sam's, but I have. I think this goes along with the idea that we KNOW we aren't perfect and we are fine with that. We all need a little wonderment.
ReplyDeleteI want you to know you are not alone. My daughter doesn't have DS, but she has a chromosome deletion that has made everything she does a struggle. I totally know what you mean about the "feeling a little sad." It's so hard to explain to people. If you ever want someone to talk to...stop by for a chat. Anytime!
ReplyDeleteI think you are doing amazingly well. I think it is definitly okay to feel sad sometimes. I know when Joel was a baby I felt sad a lot and I thought about his future a lot. When he was a few months old I found I would have great days where I didn't think about him having Ds at all and just enjoyed who he was and then I would have really bad days where I would feel so sad. I rarely feel so that sad anymore. Sometimes it sneeks in but for the most part I am focused on who Joel is and the many things he is accomplishing. It really helps once their personality starts shining through!
ReplyDeleteI think we all feel sad about it sometimes and it's normal. Lindsey wouldn't be the little girl I love without the extra chromosome. I can't say you won't be sad sometimes but things get easier.
ReplyDeleteI am not sure that I'll ever not feel that "twinge". It's not so much that I'm sad...it's just a look at the road that could have been. *My* Plan A. And regardless of the number of chromosomes our kid has, no parent wants their kid to face challenges. But, then I shake it off and move on. :-) {{hugs}}
ReplyDeleteOh, and I agree....we all feel this way about each of our kids - designer or not.
AND - I can't seem to keep my mouth shut today - I am constantly surprised at what Stella can do. How sad is that? Don't let the expectations of others shape your expectations for Bennett. He's amazing. He'll achieve to where the bar is set.
Completely normal! I had good days and bad days. I think it does get better with time but it still catches me off guard from time to time when it hits me and I get emotional. You are going to fall so in love with Bennett that you will see him so much more than you see the Down syndrome. Hugs!
ReplyDeleteHi Adrienne!
ReplyDeleteI don't know if you remember me or not, but I live in Heritage Meadows (a few doors down from Laura) and remember seeing you and Ainsley (and her beautiful, curly blonde hair!) walking around the neighborhood.
Just wanted you to know that Bennett is beautiful and what a blessing he has already to been to your family and others. May he continue to be a ray of sunshine in your home. :)
Take care and visit my blog if you have a minute! :)
http://thewilkinsonfam.blogspot.com/
Adrienne, yes, it is absolutely okay to be sad. I was sad for awhile too (quite awhile), sometimes I would go about my day feeling normal and good about all things and then my mind would remember Reid's diagnosis and it would take my breathe away, like the wind got knocked out of me. Today, I do not really feel sad because as he has grown he has dissipated my fears by his abilities, he is so amazing and so funny and so "able" to do anything,
ReplyDeleteBennett is beautiful! There will be a day you won't feel so sad, and even a day when you won't even see the Down syndrome.
Hello...congratulations on beautiful baby boy Bennett! I have a one year old with down syndrome, Jack. Reading your post was like looking back into my life months ago. I grieved, said the "what ifs" and the "why us", and felt like things were so unfair. BUT, it got better and continues to get better. I never thought there would be a day when Down syndrome would not consume my thoughts. I was so wrong. I know it is hard to conceive that things will actually be OK in your world again, but they will...I promise.
ReplyDeleteHonestly, I could sit here and write you a book with all of my encouraging words! Life with Bennett is going to be amazing : )
Adrienne, like all the previous posts...what you are feeling is completely normal and I think we all have these feelings...I can say that I am such a stronger person than I was a year ago...I can remember taking him to the store for the first time wondering if anybody would notice he had Down syndrome...hoping they wouldn't...but NOW...I WANT EVERYBODY to know. He has touched the lives of soooo many people and we have been truly blessed by him.
ReplyDeletePeople with Down syndrome are TRULY SPECIAL spirits from God...
I still have my days that are rough, but just from exhaustion of all the therapy appointments, sometimes overwhelming moments of making notes of all the things he does during the week to report to his teacher...but then there are moments that I just think, WOW, I am so lucky to have him!
I remember though in the beginning NON STOP thinking about Down syndrome...it does get better...you will see month after month...If you think too far into the future you will go crazy...plus NOBODY knows what our future holds??? I catch myself wondering more and more about my other children and sometimes get caught up in all the " what ifs" for them as well. So Down syndrome or not...Bennett will change your way of thinking and touch so many around you! He is so lucky to be born into your family. God chose you and your husband because he knows he can trust you to love him and raise him the best you can! I love knowing that! Big hugs to you! You are doing a wonderful job!
Adrienne,
ReplyDeleteAs I read thru the other comments they are saying the same thing I am thinking.....hang in there, my dear. And all of the things you are feeling are sooooooo normal. As I think back thru these past few years with JEB, I think the thing I am the most sad about is that he's 9 yrs old next week and he STILL doesn't talk......at least like a normal child should be doing at his age. It makes me tremendously sad that he's not going into third grade, a real class, and doing his summer reading and worrying about his bball team and all of that other 'normal' stuff. HOWEVER, I'm so proud of my sweet guy! This year he's made great strides in school. He knows how to do stuff I didn't know he knew. It's amazing to watch him sometimes while he's building with his legos, or coloring a picture or playing outside with all of his stuff.
You'll get the hang of it all, but somewhere deep inside, you will always have that little thought about wishing he were normal, like your girls. It's okay....I promise. Don't worry about it. GOD knows......He will give you a peace about it too!
love you!
Deb
Hi,
ReplyDeleteSo glad to hera that you are mending well.
OF COURSE it is ok to be sad. None of us want our children to have delays or special needs- there are days when I still wish-oh how I wish-that my sweet boy did not have Down Syndrome-and denying that would be less than honest with my self and others - but then tomorrow you wake up and that day is over with and it may not come around again for a while.. I do not know one Mom or Dad that would choose to have a special needs child BUT, we love our children and we cherish them for being here and we do the best we can. Someone once said that eventaully you become "ok" with it and would never trade the diagnosis. I do not know if that is true because of course I would still want Sam to not have the challenges that he has or that lie ahead but this little boy makes me love and smile like nothing else. Nothing else. And I LOVE that he is a part of us-this family-this world. And that I would not trade for a million dollars.
wait, I suppose in a way then it is true....
Hang in there. Thinking of you.
I just happened to stumble upon your blog tonight and felt compelled to write. You have every right to feel the way you do because the truth is it sucks that Bennett has DS. But it doesn't suck that you have Bennet :)
ReplyDeleteI was just heading to bed but wanted to post something really quick...yes, it is totally ok to feel a little sad! You're also dealing with all the changes in hormones from giving birth and all the emotional upheaval that goes along with that; so your emotions are going to be out of whack anyway :) But just beause you accept him and love him for who he is doesn't mean you won't, from time to time, have other emotions. I'm almost 6 yrs into this journey and there are days that yes, I still feel a little sad.
ReplyDeleteI know you don't know me, but I would love to introduce you to someone nonetheless. She is my best friend and her name is Kelly Carpenter (http://thecarpentersx4chronicles.blogspot.com/). She gave birth to a baby boy with Downs Syndrome in February of 2008. She knew he was going to have Downs Syndrome, but somehow she never struggled with it. Now, I'm not saying your feelings are in any way wrong (I have readily admitted to Kelly that I don't think I could have handled the situation with as much grace and poise as she has), but I really feel like you and she could connect in a way that might provide some awesome insight for your family and road that lays ahead. Kelly is an amazing woman (and the sister I never had) and she has been a tremendous crutch for me in times of strife and uncertainty. Her son, Landon, is the most astounding little being and watching him learn about the world around him (even if it has taken a little longer than "normal") has been a privilege. I really think she can help to guide you through your tumlutuous sea of uncertainty and help you find a safe place to land. She's also going to have some awesome advice for you in terms of services and options that are available to your family. I have met some WONDERFUL people through Kelly's new affiliations and I'm so proud to have been introduce to such an amazing group of people. Please make contact with her and let her offer some comfort and wisdom...she has handled Landon's "condition" so well and he is truly lucky to have been born into such a loving family. Landon is a miracle.
ReplyDeleteDebby Matson
Definitely ok... Kennedy is 5 and I love her more than life itself... but sometimes I still get sad too. The sad moments come and go and as time passes you'll find that those sad moments are fewer and farther in between. You're doing a wonderful job. Thank you for being real. New moms that come across your blog one day will appreciate it.
ReplyDeleteI love my son more than I could ever tell you. He has DS. He is two and a half years old. It sucks that he has DS. He is too good a person to have to deal with the challenges that he does and will continue to but maybe that is why he is such a good person, a nicer person than me.
ReplyDeleteI don't know the answer. I know that I still get sad too. I know that I adore my son.
Chris
As everyone has said, there will be sad days. There will be scared days. But there will be sooooo many more happy, proud and amazing days. I still catch my breath sometimes when I think about the future and the "what ifs"...what if something happened to us and we couldn't take care of Joaquin. I don't worry so much anymore about my other boys and know that they will be ok but with Joaquin I don't think that will ever go away. But, I take the deep breath and trust in God and my friends and family that Joaquin will always have someone to look after him.
ReplyDeleteYour baby boy is going to show you the way and will make your heart smile bigger than you ever imagined. I am overcome daily by how much Joaquin touches my soul.
Welcome to the world of DS. I have a 23 month old with Ds. I also found out prenatally that my daughter had DS. She is my third child and my first girl. I have found that I savor everything that she does. Every milestone she meets is a celebration. Having her has helped me to just relax and enjoy her. With my first two I was in the baby books every night checking off and waiting for them to do the next thing. With my daughter I threw those books out. No more Parent's magazines. My dear daughter is Unique she is not Typical, LOL. We have been blessed that she has been super healthy. My worry is other's perception of her. I know she will be teased. I know she may not get married. I know she may live with me her whole life. However, I know nothing is in stone. All I can do is put the sky as the limit and support her as much as I can. I am sure your pediatrician has talked to you about Early Intervention services. These have been so awesome for my daughter. Her teachers are wonderful. They come to both our home and our daycare. Welcome to the wonderful world that is DS.
ReplyDeleteCheck out these posts :)
ReplyDeletehttp://www.downtownds.com/message-board.html?func=view&catid=9&id=26
Adrienne - So sorry it's been ages since I visited your blog. Once Matthew arrived, life got pretty crazy around here.
ReplyDeleteBut I wanted to let you know that you're not alone in feeling sad. A very dear friend of mine who has a child with disabilities advised me before Micah was born that you don't have to grieve everything right away. And it's okay to be sad.
Hi Adrienne,
ReplyDeleteI am trying to catch up reading your blog because I have been off line for a week since we traveled to MN. I am sitting here bawling like a baby reading the comments to your post. I am also sad at times. Just a few minutes ago I was telling my husband how I felt that Sylas was sleeping too much and not as alert as I would have hoped. He tolerates little activity and then needs to sleep. I guess there will be ups and downs, that is just part of the journey. Just remember that you are not alone!
I certainly had moments that made me sad...usually when Jessie was working very hard at something that came easily to other children. I rarely have those moments now that we are further down this journey. You have so much to look forward to! With no hesitation, I can tell you I wouldn't change things if I could, hopefully one day you'll feel the same. I only just posted our story that we wrote for our Down syndrome group's new parent packets. I need to work on the pictures, they are crooked. Thought you might be interested to read how I had some of the same feelings you've had...and where we are now. You have much to look forward to in the ways litle Bennett will continue to bless your family.
ReplyDelete