Coping with a diagnosis: Advice for a new Mom

Kendra left this comment on my post:   Things I’ve learned from being a special needs Mama.

Hi, I stumbled onto this and felt that I could relate to you the most… My daughter Livi just turned 4 weeks and I feel horrible because she doesn’t have any major health issues due to Down syndrome. But I’ve still having a hard time adjusting and I hear and read everyone elses stories and I’m so annoyed that I’m still feeling sorry for myself!!! Is yours a son or daughter? and how old? I just keep panicing and fearing the unknown i feel like Dr. Gloom to just enjoy her good health, but then I keep telling myself there has to be more complications from it!!!! Thanks for listening! Kendra

I didn’t want to let this go unanswered.  It’s important to acknowledge these feelings and understand that not only are they normal, but that parents work through these feelings in their own time and in their own way.

And that’s okay.

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I may be okay with Parker’s Down syndrome, but I’m totally NOT okay with his diagnosis of pulmonary hypertension.  The fear I feel from the ph has a lot to do with the unknown too.

I’ve shared the story about a friend who after being told her newborn son had Down syndrome climbed under her bed covers, head where her feet should have been, and stayed.

A couple of years later I got a Christmas card saying that if there were a cure for Ds tomorrow, she’d throw it down the drain.

What changed?

Time.

Experience.

Talking with other parents.

I’m hoping that those who read this post will take a minute and share with Kendra your first days with your child’s diagnosis.

 


About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. Angie says:

    I have a friend having this same conversation right now too. Why both? One is enough to handle! All I can say is keep fighting for your little one. We’re the only voice they have to find answers. I will keep you in my prayers!

  2. Cheryll says:

    Hi kendra. It is perfectly fine to feel how you do. Remember we all have these expectations of our babies before they are born. They are going to achieve greatness and all that. You are in some ways mourning the loss of the child that might have been. However Downs children can achieve. Mine is almost a year now. And I feel sad still sometimes. And she doesn’t have any health issues. In fact she is a damned sight healthier than some of the non downs kids I’ve come across on hospital visits. I would advise talking to your health visitor and also seeing if there is a support group in your area. Don’t feel guilty. It’s no ones fault baby is downs. When I got the diagnosis I curled up in a ball on the hospital bed, held on to the side of the cot she was in and cried and cried and cried. But your baby is a ‘normal’ baby. Her needs are the same as all four month old babies. Love, cuddles, food, sleep, nappy change etc. She just has an extra little bit to love.

  3. Cheryll says:

    Sorry I meant 4 wks not 4 mths!!!

  4. maria cordner says:

    I can’t say that a DS diagnosis took me by suprise. He knew before my boy was born that he most likely would have an chromosomal disorder. We’re just wanted him to be alive because we had lost some babies already and yearned for a baby. Nevertheless, there was mourning…mourning of the dreams we had until they were replaced with other dreams, some better because they made us all better. The mourning became stronger with the evidence of an additional diagnosis: autism. Devastating, to see his speech regress and disapear and to see him isolated in his own world. I gave time to myself to mourn (if you don’t acknowledge it, cames back to you like shackles and doesn’t allow you to move forward). Sure, there is still times of mourning (transition times are particulary difficult) but I am now determined not to loose any time of our lives dwelling on it. I want to enjoy the child I have, not the one I thought I would have. I want to honor my unique and beautiful boy and create sweet memories because I don’t know how much time there will be. I guess nobody knows! Once, my mother-in-law who never had a child with DS in her family or husband family told – Your reactions and attitude regulate us – we’ll take it from you. Great burden but wonderful opportunity! I decided – Let there be joy for this child! I love Natalie Merchand’s song that she wrote for a girl with DS “Wonder”! I wish you the best!

  5. maria cordner says:

    Sorry for the mistypos…Read “We knew…” “We just wanted him…”

  6. Oh, first, CONGRATULATIONS on your sweet new baby!!!! Enjoy enjoy enjoy her baby-ness, regardless of her chromosomes or her health.

    Second, yup, she’s not what you expected. And it is perfectly normal/acceptable/expected/permitted to feel sorry and sad about that. For as long as you want, too. Just don’t let your own mourning interfere with her getting the time and attention and love that she needs. You can do both at the same time.

    And yes, guilty for her being healthy – perfectly normal. My darling Sofia (age 6 years already!) is the healthiest of my three kids. And knowing children like Parker and some of our other online friends, who struggle with so many health issues – yup, sometimes i feel guilty too. Lucky. But guilty.

    So what to do about that? Not much, other than understand. Understand when Parker’s mommy needs a mental hug. Understand when I’m at the supermarket and someone is struggling with a wheelchair or a canister of oxygen. Understand when someone just needs to see a smile on a friendly face.

    You have just become part of a most incredible community. A community of people who actually notice, accept and appreciate people who are different, people who are exceptional, people who are “not like the others.”

    You will learn to accept and appreciate, too. Not just your daughter, but total strangers. And it will take you some time. AND THAT”S OK!!!!

    For now, cuddle your baby, and learn how wonderful “different” really can be.

    Congratulations again,

    Francine
    Francine recently posted..RecoveryMy Profile

  7. Hi! First, Congratulations on the baby! That is right, your baby, just a baby. You treat your baby like any other baby or child.

    We has some health issues, Joey, my son, had his first surgery before he was a week old and one or two for the next seven weeks. We were in the hospital for 7.5 weeks. The people that were there all seemed to know someone with Ds or had a child with Ds, they were all so positive and had great advise. I didn’t know that Joey would have Ds when he was born, there were signs that it could be, I didn’t have a test because it didn’t’ matter to me, we had had some problems and this baby, no matter what would be the best thing ever! He is.

    Don’t look at the negative, look at the positive. It is okay be be upset, angry and hurt, deal with those feelings as best you can and seek the help of others with children with Ds or special needs. We are a support NETWORK, we can all totally support you. Your baby will do everything she can in her own time, throw out the time-lines about when a baby should do something, she will when she is dang good and ready.

    Surround yourself with knowledge, current knowledge not old books, Ds has changed so much since some books were written.

    Get in touch, if you haven’t, with your local Ds networks, get in touch with the Developmental Services Agencies in your area and start working on therapies, they can be fun for all and might easy your worry. They are wonderful people and resources, we are still in touch with ours and Joey is almost 7 now.

    This may be the hardest of all. I still have some problems with this but think of all the things that people will say to you that make you sad, mad and think of the things to say back, but be positive. This is your baby and she will love you more than anyone every could. Most people, and honestly older people don’t understand and will say things they don’t mean to be hurtful but are. My own family doesn’t understand why Joey doesn’t talk much, he has a diagnosis and has a talker now, but my almost 90 year old grandmother still asks when he will talk. He communicates beautifully and really doesn’t need to talk, his giggles are contagious and his laughter is like God’s voice, gently and filling.

    One more thing, you are your babies advocate, it is your duty to learn and fight for what you think is right. If you think you need to have your baby checked for something, like a feeding issue, then get it done. Before Joey, I wouldn’t have been so passionate about anything, but now, I am the President of our DSN here and I have talked to University students about Ds and advocacy. Sometimes 300 students at a time, that is just one of the things that Joey has give me, my voice.

    I am happy to talk with you or email with you. Just keep your chin up and hug that precious child, they grow way to fast, but no matter what, the love that you share is stronger than diamonds!

    Ellen

  8. Denise says:

    We are fast approaching birthday #13. At my sons birth, I remember feeling like there would never be joy again in my life. I cried and cried. I was so scared.

    Now 13 years later Joy is a constant in my life! I would not change my son or change my experience. Our lives has been molded, our experiences are richer, our friends and family our closer.

    Please give yourself time to mourn. This is all still very new.

  9. Denise says:

    We are fast approaching birthday #13. At my sons birth, I remember feeling like there would never be joy again in my life. I cried and cried. I was so scared.

    Now 13 years later Joy is a constant in my life! I would not change my son or change my experience. Our lives has been molded, our experiences are richer, our friends and family are closer.

    Please give yourself time to mourn. This is all still very new.

  10. Oh, wow, the first year is super-tough!! Congratulations on your baby, Kendra! You should absolutely not beat yourself up or even expect to feel fine about things. It all takes time, and for some people it takes more time than others. Just like our kids learn at their own pace, we cope and learn to cope at our own pace, too. I still have my moments, and expect I always will, but I love my daughter and her amazing extra chromosome more than anything else in the world. We just travel a slightly different path, that’s all. Hang tight, and know that you’ve got so many people to talk to, to reach out to, to vent to, and to learn from. The support is awesome, and the community is tight-knit. Take a deep breath, and give that baby lots of love!!

  11. It is totally normal to go through all of the different emotions, I went through all the stages of grief and even documented it on my blog for other moms in this position because I know how lonely it can feel.
    I think I have come to accept our daughter having a chromosomal disorder but if there was a cure I would definitely take it! I have never understood moms who say they wouldn’t, but maybe I will get there one day.
    Brittany Ericksen recently posted..One Year Ago- The Final SonogramMy Profile

  12. And the way you feel Brittany….also perfectly normal. :0)

    We all may have gone down different paths to acceptance, and each of them are unique unto us. And….it’s okay.

    I know one reason why the extra chromosome never threw me is because I was way to busy dealing with the PH. As time went on this last Hodson boy of ours won over our hearts just the way he was.

    Now if I could ever get over the fear of the PH. Especially with a right heart cath coming up. =:0

  13. Hi Kendra and Tammy and everyone who posted a comment,
    My son was also born with pulmonary hypertension, and Down syndrome, and other complications. We lost him at the age of 4 and a half months.
    I read Tammys blog because she so unselfishly shares her experiences with Parker and I can reflect on the reality of parenting a medically fragile kid who may or may not be circling the drain at any given moment. I can’t parent my son in person, so through Tammys blog and others I can do it in my mind. It might seem creepy to you, but this is how I am grieving his loss. And, I would walk all the way to Utah from Australia if it would bring my son back, complete with his extra chromosone. But he is not coming back.
    But that is not how I always felt. I was very confronted about having a child with Down syndrome. I would definitely have taken a cure for Ds at just about every point in his life. Sometimes when people called my son beautiful, it caused me to have an inward cringe, it stepped right on a sore spot. I focused on his other medical struggles and forgot about Ds while he was fighting in intensive care. Then there was a point where I felt that I loved the Ds part too. But I still didn’t know how I would approach his future. I was confused by new words and terminology I had to learn and the support services I had to contact to go on a waiting list. I felt completely lost. I felt very much like the poem “Welcome to Holland”. I felt out of my depth and not up to the challenge. But at that point I had embedded his Ds in my soul, and we had become a pair.
    It is hard to be a mother of a baby with Down syndrome, there are the cruel questions like “Did you know?”. Implying that I should have had an abortion and saved myself the heartache. People suggesting that it was foolhardy to choose to have a child in my 40’s. But you will find the way that is right for you and your new baby. I hope that you have already found that your heart has been captivated and you know that you are on the biggest adventure of your life.
    My son is the most extremely cute baby and I am sure that he would have had the most captivating character. I love him fiercely, I grieve him sorely. I wish I could have him back.
    Sorry if this reply is too creepy Tammy. Please feel free to not post my comment.
    Julie recently posted..Right Where I Am- Three years Two months and Twenty Seven daysMy Profile

    • Julie! Creepy? NO WAY! I think your comment was incredibly heartfelt and beautiful. Thank you so much for opening up your heart and sharing it with us.

      xoxo

  14. Dear Kendra,
    I was fortunate that my son with Down syndrome was born after his older sister ~ and in my first ‘Mommy and Me’ classes with her, I met dozens of other moms who talked about how they felt those first few weeks. Not one of them had the same story, but what they did have in common is that each and every one of them felt like they were the only one who did not feel completely happy and fulfilled; just about every one talked about feeling overwhelmed, inadequate, or not measuring up to other mothers. Of course in those early weeks we have so much going on in our physical bodies, recovering from childbirth and getting back to a new normal after nine months of pregnancy, learning more about ourselves in a totally new role as mothers, and everything else that happens when our newborn is in the house.
    When my son was born, he was diagnosed almost immediately – both my OB/Gyn and his nurse were raising their own sons with Down syndrome, a 16 year old and a 4 year old. Several people I had met in baby classes with my daughter had friends who were raising children with Down syndrome, and there were wonderful people in the local parent advocacy community who visited me in the hospital. I had the best support and most up to date and positive information available, and my son did not have any of the health problems that are more common in babies with Down syndrome and only one more common in prematurity.
    My first weeks after his birth were still very difficult. Every so often I would feel inadequate, overwhelmed, and like the only mom of a baby with Down syndrome who felt that way.
    When my son was three months old, I took him to his first session of Mommy and Me ‘infant stimulation’ at our local early intervention center. I had heard that there was one other woman who had a baby with Down syndrome in the group, a little girl his same age. The staff and therapists had told me the other mom was amazing and I was a little bit intimidated by her reputation. Eventually I dragged up the courage to take my son to the play area where she was working with her daughter. She seemed to ignore me for a few minutes and I could not bring myself to attract her attention. She glanced over and saw my son, eventually, and then looked straight into my eyes and said “Where the he// have you been? I’ve been all alone here!”
    That’s the first minute I felt I could live up to all the promises I had made to my son when he was just a few hours old. So, it is always my hope that every new mom can find another mom with attitude who will let her know that she is not alone, and pretty much everything will be ok. She is still my inspiration, after all these years. I hope you get out there and find someone who is that person for you. I think it is highly likely that you will be her for someone else.
    Congratulations on your beautiful baby.
    Pam W recently posted..Choosing Inclusive Summer CampsMy Profile

  15. Wow, these are all great posts. I hope it’s okay if I post here. My baby doesn’t have DS, he has Trisomy 18, usually considered “incompatible with life.” I think we go through all the stages of grief, and not always in a logical order. I was devastated at first, and for a long time. As time has gone on, I have learned that there is a wonderful, special spirit that could not shine through otherwise. I would not give this up for all the world.

    At the same time, because T18 is usually lethal, a LOT of moms I’ve gotten to know have buried their babies. I know guilt is not a productive emotion here, but I feel it as I get to keep holding and cuddling and loving on my baby. And then I turn around and see the beautiful “normal” babies born the same time as my son walking and talking. He’s trying to learn to hold his head up.

    I think the key is to allow yourself the full range of emotions. Some days are just going to be really HARD. Other times you’ll wonder why you were being such a baby before, but those times will come back anyway. Just give yourself the permission to feel everything the same way would let a friend feel them. You have had to bury the dreams you thought you had of your child. New ones will take their place but they won’t be the same. Not better, not worse, just different. Take care of yourself, and you’ll come around.
    Rebekah recently posted..Aarons First Year- part 2My Profile

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