I’ve been contemplating on whether or not I wanted to write this post for several weeks. I actually typed it up on my computer thinking that I could trick my sub-conscious into being satisfied with the fact that I had at least written down what I was feeling, but that didn’t work. So before I go any further let me say that I do not mean to offend anyone with my opinion, I more so just want to see if I’m crazy for thinking this way.
Caroline was born in May of this year. As I’ve touched on before, my pregnancy with her was very emotional and filled with stress. From my 20 week checkup we were told that Caroline was measuring close to the bottom 15th percentile, and upon further investigation we were told she had a major heart defect that would require open heart surgery to repair either immediately upon birth, or within the first 3 months of life. However, thank god, when she was born they discovered she had no heart defect and everything looked fine.
As hard of an experience as that was, I feel like it was God’s way of preparing us for the news that we would receive when she turned 1 month old, and that was that she had WHS. Of course, we were devastated. How a little girl who seemed so perfect could have something wrong with her was something that I couldn’t wrap my mind around, and like most cases, her Geneticist had never seen this before and could only rely on the internet to provide us with information. However, something that her Geneticist told me at that appointment has stuck with me. He said, “I know this seems really scary, but as her doctor I am telling you that I honestly believe that she is going to have a very mild case. However, as her doctor, it is my job to make sure you are aware of all the possibilities of what could come from this, but as her parents, it is your job to be hopeful and pray that she will be fine.”
The biggest struggle for me after her diagnosis was not all the possible medical problems she would have, or dreading all the doctors appointments that I knew would consume our life from this moment on; it was the thought of all the things that she may want to do in her future, that this “disability” may keep her from doing. My husband and I had a conversation before we ever had kids (Caroline is our 2nd). We both agreed that we wanted to make sure that were able to give our kids every opportunity to do whatever they wanted to do. He provides more so financially, and we have been blessed as a family so that I am able to stay home with our kids and be available to take them to practices, recitals, etc. The thing that makes me sad is to think that one day I may take Caroline to one of her big brothers baseball games, and she may look up at me and say “momma I want to play that” and that I may have to tell my little girl that she can’t ever do that because of this “disability”.
Now obviously I have no way of knowing what Caroline will be able to do in the future. Will she be able to walk, talk, ride a bike, or do any of the things that we take for granted with our children? Things that we never question that they will be able to do, until we are faced with a child that has a disability and are told that nothing is guaranteed. But what I can do, is make sure that I help her every step of the way. Make sure that I go above and beyond to give her everything that she needs and more, that may help her to one day do these things. And in a way, that’s what I love (if I can say that) about WHS. Nothing is written in stone, every child is different, and not having someone tell me that Caroline will never do something, means that I will never lose hope. It means that I will treat her like a “normal” child, until she shows me that she needs extra care or assistance in some area, and then I will do everything that I can to give her the best assistance possible. No she may not crawl or walk when most other kids do, but who I am to treat her like she will never do those things, that’s up to her and God isn’t it?
Now don’t think that I don’t worry about her. I worry about her all the time. I watch her so closely at times, that I can manifest “problems” that aren’t really there. However, to me, so far, Caroline is a very “normal” child. She does seem to have fewer complications than some other children with WHS, so far, and I am very aware that this could change tomorrow. She has fed exceptionally well since birth, and now at 5 months drinks a 4oz bottle 5-6 times a day, and is eating 2 tablespoons of solids by spoon twice a day. She has had all vaccinations on time, and thus far has been cleared of any medical complications other than grade 3 kidney reflux on one side, and fluid behind her ears. She weighs in at 10 lbs, and can almost roll over from front to back, supports herself on her arms when on her tummy, and has even began to practice sitting independently. She has an amazing therapist that comes once a week to work with her, who has made the comment that she thinks that she could come once a month and Caroline would be fine, but since she is the only girl that she gets to see, we keep her coming once a week!
In conclusion, I guess what my anxiety was about posting this, was that people would think that I am to “lax” with Caroline. That I don’t guard her enough, or that I don’t take enough precautions with her. In my mind, my answer to that is yes, she has WHS, but she is also a little girl, who deserves the opportunity to experience life, and all the joys and wonders of it, just like any other little girl should. Now I’m not saying that parents who do guard their kids are wrong for doing that, like I said, every child is different, and I may not feel this way if Caroline was affected differently. I know that one day, I may not be able to take her as many places because of WHS, but until that day comes, I will not “rob” her of these experiences just because of the what if’s that exist in her life. I think I can confidently say that as parents of special needs children, we all have that wish that our kids could just be able to experience a “normal” life, and for me (at least at this moment), I don’t see why Caroline can’t. I know that it’s easy to get “down in the dumps” when your given this diagnosis, and believe me I was. I must have cried every single day for at least a month just thinking about what she could miss out on in her future. Sometimes I think there is something wrong with me as her mother because I didn’t stay in this stage for a longer period of time. Instead I just decided that she would write her own her story, and that until she showed me that I needed to be doing things differently, I would take an approach to raising her just the same as I did with her older brother.
I hope that one day I can look back at this and still agree with what I’ve written, but if I can’t, then I will accept where her path has taken her, and I will still be by her side every step of the way!
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Beautifully written! I love that you treat her “normally.” I do the same with Dylan (4yrs). He goes with us everywhere and I try to keep my life as “normal” as possible – we just have a few extra appointments thrown into the mix. Some days are hard but I have that same thing with his two typical siblings. Only time will tell what our children will accomplish. I have erased the word “never” from my vocabulary when talking about Dylan. He has already done so many things that we were told he would never do. Caroline is a beautiful baby and I know that she will continue to break those boundaries and thrive. 🙂
Well spoken! To be able to share your thoughts, feelings & fears shows your strength and faith. God has blessed Caroline from day one with the most awesome parents & family. I have no doubt that she will have the best support system and be cheered on in every aspect of her life. Caroline is a beautiful child and will touch the lives of many people. Each time I see her photos it warms my heart & makes me smile. Stay strong and take one day at a time.
You are such a wonderful mom! I felt the way you feel for a long time. I can tell you are still in the grief process. But one day you will be over it, and everything will be brighter and better. What I learnt from my daughter Cassidy is that WHS kids don’t really want to do things “normal” kids want to do, they don’t want toys or any materialistic thing. All they want is YOU and your LOVE. My daughter can play with my hands and my long hair all day, she likes to touch my face and lick it (that’s how she gives kisses). When I leave the room, she cries and gets really worked up. When she sees me, she has the biggest smile in the world. She is happy as long as I am there with her. I still feel pain in my heart, and my broken heart for my little girl has not healed and never will, but I feel so much better, and life seems happier. It just takes time…
I admire you for the way you are treating this. With all Syndromes there are different degrees and your daughter may not be affected very much by this and by doing what you are doing she will be ready for her future. If sh only has a mild form of it and you wrapped her in cotton wool she would end up not reaching her full potential. Keep on as you are as you are doing the right thing.
I really appreciate your struggle to sort out your feelings and honestly share them with us. It seems that the information you were given during your pregnancy and when Caroline was diagnosed were devastaing, but the reality of having a child with WHS is not. We live in a world that has not recognized the gifts a differently able child offers. You do that every day. It is emotionally confusing to love and value a child that may not live up to social norms, such as playing baseball. You are able to recognize her unique talents. She finds joy being with you and playing with your hair. The future is unpredictable, but if you love Caroline as she is today, you prepare yourself to do that in the future. You are doing a great job being a parent.
I guess another reason that I feel this way is because of the experience we had when Caroline was 3 months and was evaluated by Early Intervention for the first time. They determined that she was about a month delayed. They showed us different exercises and activities to do with her to catch her up, and she picked them up within a week. So my husband and I talked about it and felt that it was a little bit our fault she had that delay. When we were given her diagnosis we had no idea what to do with her, or what we could do with her, so we didn’t push her to do as many activities as we should have been, and it wasn’t that she couldn’t do those things, like she showed us once we started, it was that we were not giving her the opportunity to do them. So that has played into our feeling that we do not want to treat her like she can’t do something, because we may be the cause that she doesn’t do some things.
Hello, there. My husband and I have a little girl, Kallan, with WHS. Reading your story was just like reading my own. When Kallan was diagnosed (around her first birthday), I was very upset at first. I had all the same thoughts about what she would be losing out on. So far, she hasn’t missed out on anything. She might just have to wait a little longer than her peers. She turned seven this September and just started dance lessons. I had no idea if this is something that would be available to her, but I am finding anything she wants to do, our community has a way of letting her do it. I still think about what her abilities will be in the future, and what she won’t be able to do, and then I think about how lucky she is to be able to live a life without all the junk the rest of us have to deal with. She is so amazingly loving, and she is greatly loved. We have always said it is her job to spread joy in the world. I think that will always be the case. If you ever want to talk to someone, please feel free to contact us. We have never ever met another family who includes a child with WHS. I know there is general support for families, but it’s not the same.
When Liam came home from the hospital he was on an apnea monitor. I didnt give him any tummy time at all bc i thought the probes would hurt him if placed on his belly. So when early intervent said he was about a month behind, i blamed myself too. Thats not the reason for the delay tho, its bc of the syndrome. I was where you are too. I still treat Liam typically, with exception for being cautious of seizure triggers. The older Liam got the more the delay became visible. Is he doing amazing? Absolutely he is. He is doing amazing things, things i was told he would never do. But id be lying if i said i never thought your thoughts. Get them out and feel your feelings. Life is about so much more than baseball games and recitals and Caroline is going to show you that. We have these ideals of what fun is. Nevermind the syndrome, just think about other countries, they have their own idea of fun and so do our babies. If she wants to do something she is going to do it. Caroline is going to show you how to love deeper than you ever thought you could and she is going to show you how much fun simplicity is. Hugs mama.
Caroline will give so much to you and your family. Just you wait and see. This phase is just part of the process. Hopefully, the tough part is behind you.
Thank’s everyone. And Cheryl, Liam is so inspiring. I love seeing all the new things he is learning to do, and I know there are lots of kids with WHS that are able to accomplish amazing things, so that helps me to not ever doubt what Caroline can do.
And just to clarify, because I don’t think I used the best example and maybe made it unclear, I’m not worried about her specifically missing out on baseball games and dance recitals, that was just the example that popped in my head when I was writing. It could be something as simple as her wanting to get up and run around and play with her brother, and not being able to do it. But I’m done thinking about all the possible things she will miss out on, and instead I am focusing on enjoying her as she is! A part of me is happy that I get to enjoy her at every stage of life for a little longer than most people get to (since we only planned on having 2 kids). She is already so much fun, and we all enjoy her just as she is!
As a mum of a little girl who has recently been diagnosed with WHS reading your story felt like reading my own thoughts and fears written down in words, it can be scary not knowing what to expect and hard to try not to let yourself worry about future things that you can’t control (I find myself thinking about the day she decides to start a family and the worries she will have then – she’s only 21 month old). I too was told by the geneticist that she would most likely be on the milder side of the scale. I hope that I can raise my daughter the way that you do with Caroline and not let my worries take over.