10 Things I have Learned From My Daughter’s Diagnosis; Joy’s Story

I would like to introduce you to one incredible mom, Tamara as she shares her journey of parenting and advocating for her daughter, Joy.

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Tamara Hansen lives in Northern California and is a wife, and the mother of two young children. Her oldest daughter Joy (4) was diagnosed with hip dysplasia at birth. Both of her hips were dislocated and out the socket. Joy is a smart and vibrant young girl, who has now had four surgeries, and faced a few complications along the way. Here she shares what she has learned on her family’s journey.

The 10  Things I Learned From My Daughter’s Diagnosis

1. Patience is a virtue, but it is also necessary. There is so much waiting – waiting in-between and during appointments, for the doctor, for x-ray results, and of course, there is the dreaded waiting during surgery. Time also seems to move at a snail’s pace while waiting for her to recover from these surgeries.

We are always waiting. We are currently in the midst of the longest wait we have had, up to four years before the next planned surgery. Four years, that’s a really long time when so much of the past four years have been spent at the hospital. We always hope for good news, but are prepared for bad news. The anxiety is all in the waiting. As my husband I have grown accustomed to saying after any news, “at least now we know.”

421233_4968839705951_1406490286_n2. There’s a grieving process. Joy’s hips were found to be abnormal within a couple of hours of her birth. Of course I was over the moon, happy new mom on the outside, but on the inside it was much more complicated. I was devastated that there was something wrong with my baby. Don’t get me wrong, I sat for hours holding my long-awaited daughter, falling more in love with her by the minute. But, I also sat for hours crying over her. I was heartbroken that I couldn’t hold her without this horrible brace between us, that it made establishing breastfeeding challenging and it was a pain to change her diapers. I was sad that she couldn’t wear any of the cute outfits I received as shower gifts, I ached to give her, her first baths and I wanted all those pictures of my newborn to be without that darn contraption.

I was also angry. I had worried about everything when I was pregnant, and I mean everything. I read all the books, did all the research and I was prepared. Prepared for anything, but not this. Why hadn’t anyone warned me this could happen? I hadn’t even heard of hip dysplasia. So many questions and not so many answers in those early days didn’t help. The worst of it was the guilt I felt for being upset or complaining when there were so many other families facing far worse circumstances. This wasn’t life-threatening, but it certainly felt life-altering. Throw in those awful postpartum hormones and I felt myself heading toward a deep depression. Yet, somewhere in those few months when I felt robbed of the “normal” newborn experience, I realized I had to grieve, and it was okay. In fact, it was essential to go through the process to eventually get to a place of acceptance that this was going to be a part of Joy’s story, our family’s journey and we were going to face it head on.

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3. The present really is a present. The thing about receiving a big diagnosis like this is you can easily get caught up replaying the past in your head. Going over and over the medical information, the treatments, the doctors’ explanations, and the traumatic moments. There are the doubts. What if we had seen this particular doctor sooner, or what if he did this procedure first, or instead of? How many more surgeries will she need? Will this get easier, or more difficult, as she gets older? “What ifs” can easily lead to a lot of sleepless nights.

Our beloved surgeon has helped me tremendously in keeping all this in check. Each time we see him, he reminds us that we have had some setbacks, but to focus on the successes and stay present. It’s not always easy, because the physical and emotional effects are always there, but we focus on how far she has come and how well she is doing right now and that’s the best present we could ask for.

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4. It really does get easier. I know that’s a hard one to swallow, even for me sometimes. There was a time not too long ago when every doctor appointment, even routine, would send me home fighting back the tears. I would spend countless hours on the Internet looking up information, seeking answers and sometimes even spending the next few days having a pity party for one. Pretty much feeling like I had to go through the steps of grief all over again, with the bad news we had been handed.

Fast forward to now, when we have become veterans to traumatic procedures and getting mixed results. We have more time to prepare Joy, and ourselves and that makes it easier. I am still sad and angry that my sweet daughter has to deal with all this, but I don’t let my emotions overcome me anymore. I make it a full-time job to ensure she is being treated by the best doctors and has the best opportunities to cope with her situation.

As harsh as it may sound, I sometimes feel callous to it all. That I have no more tears, no more energy to add to my worry list and that I almost welcome bad news because it’s better than anticipation of bad news. We get the facts, we process, we move forward. It is all familiar, which makes it easier to cope with.

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 5. First and foremost, I am her advocate. I have always tried to live my life without regrets. In the end of a bad experience I would focus on what I learned and move forward. However, the way things were handled by some medical professionals in the beginning of Joy’s diagnosis left me reeling with regret for a long time.

I shouldn’t have listened to a certain nurse, I should have sought out a different specialist sooner, I should have stopped that pediatrician from that exam and the list goes on. I finally had to forgive myself. I was a new mom, this was a condition we knew nothing about and it was not our responsibility to see that we received compassionate and knowledgeable care. We were not at fault.

Moving forward there would be no more shortcuts, we would seek out only pediatric specialists, we would ask questions, take notes and make sure we always understand the answers. I used to worry about hurting feelings or stepping on toes by switching doctors, or asking for second opinions. Not anymore. I have learned to be strong, assertive and settle for nothing less than the best care for her at all times.

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6. Child Life Specialists are more important than surgeons. Don’t get me wrong; we have been blessed with some amazing doctors, nurses and what they have done for my child, what they do for all children, is immeasurable. Yet, when I put Joy’s medical needs in perspective I often think back to the age-old saying “all I want is happy and healthy baby.”

The truth is we don’t all get a healthy baby. We have no control over that, so instead I focus on the happy. If nothing else, I can ensure my daughter grows through her challenges and still lives a happy life. None of this would be possible without the help and support of the Child Life Specialists we have met along the way. Their tools for preparing her for procedures, processing traumatic experiences and giving her a voice and control when she has no choice about what she must endure has been paramount in keeping her a happy little girl. The support we have been given by these wonderful, caring and gentle people are my guiding light on this journey and I am forever grateful. I am even contemplating going back to school and becoming one myself.

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7. Support can come in surprising ways. To be brutally honest, I have found myself with hurt feelings more than once when some of my family and friends weren’t able to offer the kind of support I would have expected. I know their hearts were in the right place at the time, but saying things like, “she won’t even remember”, “at least it’s just her hips”, “be lucky she’s in that cast so you don’t have to chase her around”. These comments do not help, they hurt.

The things that do help are a listening ear, understanding why it’s not that simple, why we can’t come to the park to play and that sometimes I just don’t want to talk about it. Those that have been the most supportive are the friends I have made online. The moms who in my support groups that live all across the country and even on the other side of the world. They just get it. We just had our second annual meet-up with families that share this journey with us semi-locally and there are no words on what it feels like to hug those moms.

My relationship with my husband has surprised me as well, I can’t imagine doing any of this without him. I’ll never forget the day before Joy’s first surgery. I called him at work from a parking lot crying hysterically that I didn’t think I could go through with it. That she was just too little and this was just all too much. He came home from work that day and walked upstairs where I was packing our bags and started reading me our wedding vows, “…comfort you in times of sorrow and struggle… when life seems easy and when it seems hard..” We both hugged and held each other close with no words for a good half an hour. I knew then God matched me with the just the right person to share this with.

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8. To take care of myself too. I admit I am a work in progress on this one, but I know one of the most important things I feel that I can do for my daughter is model self-care. I had a therapist tell me long before I was married or had children that I was prone to being co-dependent. That was no surprise to me based on my own childhood and some of the choices I was making as a young adult. What did surprise me was how much a simple analogy he gave me to visualize would help me through life’s biggest stresses.

So, when I start to get exhausted and burnt out I always think about how a flight attendant instructs you to activate your mask before helping others or a child. I try to model for Joy that when I am feeling anxious or upset to go for a walk or ride my bike, take time out to have coffee with a friend, spend some time writing my feelings out or just take some deep breaths. It’s like a double whammy – I get a break to fill my cup, and I get to teach my children how to emotionally take care of themselves too.

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9. We get our strength from each other. I wish I could take credit for how strong this journey has made me. The truth is, an inner strength that I never knew I was capable of, appeared the day I first handed my tiny baby to a nurse and sent her into her first operating room for 8 hours. Where did it come from? It came from her. It came from watching her wide trusting eyes as she went behind those doors without me. It came from her smiling and cooing just as any other three-month old would despite wearing a body cast. It is her determination to catch up on her milestones after surgery. It came in watching her stand up, take her clothes off and climb into the bathtub after three long months of not being able to walk and only have sponge baths.

When she was first diagnosed I was terrified that I wasn’t strong enough to get her through it, but she in turn was the strong one, and that got me through it. In the past few years we have a special connection, we can look in each others eyes and see who needs to be strong for the other in that moment.

2014-05-28 15.34.3310. There are some heart wrenching lows, but there are some incredible highs. I really can’t imagine a much worse feeling than watching your child frightened or in pain and there is nothing you can do about it. I would trade places and be the one to suffer if I could. Those moments are the lowest of the low. When you are that low, diagnosis don’t matter, treatments don’t matter and the future does not matter. I don’t care what any doctor as to say. I just want my precious baby to be free of pain and discomfort. “Heartbreaking” doesn’t touch it, it’s just indescribable.

On the flip side, when you and your child have seen lows, you also get the blessing of some indescribable highs. Watching my daughter go through surgery after surgery, casting, bracing and long recoveries be able to learn and re-learn to walk , ride a bike, run and do ballet alongside her peers, is nothing short of amazing. I am filled with an overwhelming amount of pride and love to witness her resilience. When you have overcome so much to get there, your heart and soul are overflowing with, well Joy.

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Click here to learn more about Hip Dysplasia

Facebook Community Page: DDH Hip Dysplasia- Children Facing Surgery or Spica Casts

Facebook Community Page: Raising Children with Avascular Necrosis

Related Articles:

Play Group vs. Support Group

How to Help During a Hospitalization

Child Life Encounter Post NICU

18 responses to “10 Things I have Learned From My Daughter’s Diagnosis; Joy’s Story

  1. What an inspiring, heartwarming story! I love the photos that document the highs and lows, showing the pain and the humanity and joy of this journey forTamara’s family. Everything is woven together, and it so clear that this child feels the support and love of her family. Bravo!

    • Thank you for your kind words Deb. Joy has two photo books I have made her of her “hip adventures” and loves the all the pics too. There were many times when a picture was the last thing I wanted at the time, but they are indeed a part of her story and I am so glad that we have them for her. I can’t think of a better compliment that Joy feels our support and love, thank you!!!

  2. Oh man! Oh man! Tamara, Quincy sent me this link. I am so honored to read this and to get to know both you and Joy a little bit better by reading this list. Thank you so much for writing this down. I would love to share this with our members but am not sure how you’d feel about it of the best way to do it. For me, it makes me love Joy (and admire you) all the more! And, the beautiful photos make me cry and smile! Thanks for sharing!

    Molly

    • Oh Molly, what a surprise that this got to you! Thank you for your sweet words. I am feeling a little shy right now about how many people have been reading and sending such beautiful messages.. but yes, I would be touched to have you share it however you like.

  3. I must admit I both cried and smiled while reading your post. I myself deal with casting and surgeries due to my daughters right clubfoot, so this post hit close to home & I can totally relate. I truly admire your courage and Joy’s strength! Those pictures are priceless, Joy looks happy and thats whats important.

    • Thanks so much for commenting. It can be incredibly difficult for parents to witness their children going through traumatic experiences. Sounds like both you and Tamara are strong mamas that will do what it takes to help your child cope.

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