30 September 2014

I Wish My Child Didn't Have Down Syndrome.....


Lately, our lives have been filled with a lot of greatness. We had our interview with Global News and it went really well. The donations and messages have been coming in and the words of support have been overwhelmingly heart warming. It aired four times and each time, I got more likes on Adele's page and more support from people all over the world. I am so happy that we chose to do the segment, although, it's not me. I didn't do this for me, I did this for the girls. I did this for all of Adele's friends. It warms my heart to see all of the love come pouring in for our amazing little miracle. We have a few more media opportunities that are coming up in the near future. We are grateful.

GLOBAL NEWS


The other night, as I was laying in bed, I was thinking about our life with Adele. I do this often, think about the future, think about things that I would change, things that I would do differently and how I honestly feel about Down syndrome.
It's difficult to explain exactly how I feel. There are so many aspects of Down syndrome that warms my heart, but there are so many other things that I detest. I've been reading a lot lately, different posts from moms saying that they would never change their child, they would never change the fact that their child has Down syndrome. I've thought a lot about this and I think I've even said that I wouldn't change Adele. I think I say this to others because I should say it, I should tell others that she is perfect just as she is, she can do anything, she can do everything that 'typical' children can do. The truth is, I'm not too sure if I actually feel this way, if I believe my own words.
Would I change Adele? No, I wouldn't change that we have her in our lives. I wouldn't change her eyes, her smile, her giggle, her little legs and perfectly round face. I wouldn't change Adele, but I would change that she has Down syndrome. Yup, I said it, I would get rid of the extra chromosome. 
I don't know if this sounds harsh. I don't know if it's the wrong thing to say. I just don't know if I believe parents when they say that their child is perfect with Down syndrome. I read posts from parents sharing their fears as their child heads back to the operating room for the fifth, tenth, thirtieth time. I see feeding tubes. I see cannulas. I see scars. I see stress and upset and fear.
How, as a parent, would you not want all of this to go away? Maybe you do want it all to go away, but you would not ever consider wanting a child without Down syndrome. I don't know.


There is a list of things that I don't like about Down syndrome:

KIDSHEALTH.ORG

Medical Problems Associated With DS

While some kids with DS have no significant health problems, others may experience a host of medical issues that require extra care. For example, almost half of all children born with Ds will have a congenital heart defect.

Kids with Down syndrome are also at an increased risk of developing pulmonary hypertension, a serious condition that can lead to irreversible damage to the lungs. All infants with Down syndrome should be evaluated by a pediatric cardiologist.

Approximately half of all kids with Ds also have problems with hearing and vision. Hearing loss can be related to fluid buildup in the inner ear or to structural problems of the ear itself. Vision problems commonly include strabismus (cross-eyed), near- or farsightedness, and an increased risk of cataracts.

Regular evaluations by an otolaryngologist (ear, nose, and throat doctor), audiologist, and an ophthalmologist are necessary to detect and correct any problems before they affect language and learning skills.

Other medical conditions that may occur more frequently in kids with Ds include thyroid problems, intestinal abnormalities, seizure disorders, respiratory problems, obesity, an increased susceptibility to infection, and a higher risk of childhood leukemia. Upper neck abnormalities are sometimes found and should be evaluated by a doctor (these can be detected by cervical spine X-rays). Fortunately, many of these conditions are treatable.

Low muscle tone (called hypotonia) is also characteristic of children with Ds, and babies in particular may seem especially "floppy." Though this can and often does improve over time, most children with DS typically reach developmental milestones — like sitting up, crawling, and walking — later than other kids.

At birth, kids with Ds are usually of average size, but they tend to grow at a slower rate and remain smaller than their peers. For infants, low muscle tone may contribute to sucking and feeding problems, as well as constipation and other digestive issues. Toddlers and older kids may have delays in speech and self-care skills like feeding, dressing, and toilet teaching.


I have this fear every day that something may go wrong, that her health may take a turn for the worse, that all of a sudden, I'm told that she has cancer. People who don't know a lot about Down syndrome, they see the physical features associated with Ds, but they don't realize that there are so many other medical concerns that come along with the diagnosis. They see happy and joyful Adele. They have a preconceived notion that people with Down syndrome are always content and easy going. They don't think about how Adele will need extra support and attention for the entirety of her life.
I get that we all worry about our children, that's what we do as parents. There are a lot of blog posts floating around about being a parent to a child with special needs. They talk about sleepless nights, appointments, surgeries, illnesses, stress, the loss of a normal life. I have read a few of them and I get it, but they all seem to end with, I would never change all of this for the world. I don't get it.

I don't regret for an instant that we brought Adele into this world. She is a perfect little miracle. I would rather a child without Down syndrome. It's not the journey that we asked for but are learning how to cope and deal with the appointments and the delays. It's difficult when your 14 month old is not sitting up unassisted, she's not crawling, she is just getting her first tooth, she is behind. People will say that she will get there. I am totally aware that she will get there. I get that she is going to crawl and walk and talk. It makes me mad some days that she has these mountains to climb. That's what they are, mountains. Our children have to work so hard. It makes me sad. I cry when she hits milestones. It's so emotional because I have watched this little being work and work and work just to achieve a small goal. I wish it was easier.
I need to think about the future because Adele will always need support. We will need to have a plan in place for when she is older. You have to do this when you have a child with Down syndrome.


There is no embarrassment that my child has Down syndrome. I don't feel ashamed. I just want her to be able to take the easy road, not the one that is filled with windy curves and bumps. Life should be easy. It sucks when you bring a child into the world and you know that it's going to be difficult. It's going to be difficult for all of us.
All of the projects that I have started are for the girls. I love making the baskets. I love taking them to the hospitals. I am doing this because it is important to me. I want to change the world. I want to educate and let others know that it can be done, but it is work. It is tough. It has its moments. There will be times when you sit down and cry because you feel sorry for your child, you feel sorry for yourself. I have been told many times that we were given Adele for a reason. I do believe that both of our children were given to us for a reason. They have made me a better person. They make me want to do good for others. Some days, I feel that maybe I am working too hard at making sure that Adele has a good future. Does that make sense?
I've read the poem 'Welcome to Holland' may times. I loved it when I initially read it and then I realized that I want Adele to see Italy and all of the architecture and beauty and to be a part of the fast pace. I know that Holland is beautiful, there is no doubt, but I wanted her to choose where she wanted to go. I didn't want her future to be decided for her, that's not fair.


To wrap this up. I love Adele and Brinley with all of my heart. I could not imagine my life without either of them. I love my days. I love taking the girls out. I love showing them both off to new friends and sharing their pictures with the world. I will continue to work with both girls so that they are able to achieve their dreams and goals and their father and I will always be their strongest advocates. I love both girls equally. I am still new to this journey. I don't know what the future holds. Maybe I feel sorry for myself, that I have to raise a child with Down syndrome. Maybe I am the one who doesn't want to work harder than other parents. Maybe as Adele gets older, my brain will relax. I will take life day by day. I will let Adele just be Adele and accept that we were chosen to be on this journey.

I just want the journey to be beautiful for Adele.


 







16 comments :

  1. I think we all wish that, it's just that we have entered some strange twilight zone wherein we have to deny some of our experience to make others more comfortable, society is still very uncomfortable with our children and it causes us to have to find strange ways of coping and I think maybe one is this denial..it has us plastering a smile on our faces and sticking a strawberry on top of the whole situation.. it's also strange and sick that our children are described as either angels from heaven or burdens which should have been terminated.. no middle ground..

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    1. Well said! I love how you describe it, plastering a smile on our faces and sticking a strawberry on top. That's it!
      Thank you
      Krista

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  2. Krista....Hands down, best post you have written. Your wrote your raw truth. And I think all of us Moms who have kiddos with Ds can relate to this. We have all said the words "I wouldn't change a thing about him/her"...Because we love the very core of who our child is. We accept our child. We see our child as beautiful and perfect.

    But...

    Would any of us purposely want for our child to have Down syndrome? Do we want to deal with medical issues? Do we want to do dozens of rounds of Therapies? Do we like to see our children struggle at simple tasks? Do we like having to think and plan ahead for our child's future in a way we don't have to with our other children? No. I don't think any of us want these issues...They can be very trying. Emotionally draining and just hard on the heart to deal with. Who would wish any of this upon themselves or their child?

    If I could take Ds from my son, I think I would. It is hard for me to watch his struggles. I would want for his little body and mind to work smoothly for him. And at the same time I love him for exactly who he is.

    I think you will find as you continue on this journey, as Adele grows, your thoughts and opinions on things like this will change often. Russell is almost five and I still go back and forth with how I feel. What I write now is different than what I have written in years past. It's a journey of growth.

    I'm proud of you Krista. You are the most amazing advocate for your daughter. Never be afraid to share what you feel because there are so many of us out here that can relate. xo

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    1. I ALWAYS look forward to your feedback Jenny. This one was a bit difficult to write because I didn't want it to be taken the wrong way. I love Adele beyond measure. She is perfect but I don't like all of the crap that comes along with Down syndrome. I love that you let me know how things will go, you are ahead of the game, so hearing what you have to say and that you went through the exact same emotions, brings me comfort. I am going to read your comment many times. Thank you. xo

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  3. I don't have a child with down syndrome so I don't know if it's for me to say or not, but as a parent, I get it. I mean, if you could choose between pain and suffering or NOT for your kids, what parent wouldn't choose the latter. Thanks for your honesty.

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    1. Thanks Maya! You absolutely have the right to share your thoughts and feelings. I love Adele beyond measure, it's just certain parts of Ds that I can't stand. It's a journey for all of us. Thank you for sharing your comment. Krista

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  4. It's amazing to bravely right with such honesty. You will always have these posts to see how your life shifts and perspectives fly up and down and all around--IF you continue to post with true integrity. Don't be hesitant to not write anything, even if it's notes that you ARE unsure about posting. Keeping parts of your journey to your own or immediate family is allowed too--and deciding to post more of that at a later date is fine.

    Looking forward to may more posts so full of love. And truth. Do take the journey full of the high highs and sometimes lower lows. You will treasure crying at the milestones and LOVE every one but yes, at times with bittersweetness. Okay usually with that maybe.

    I often feel like a brand new "babe in the woods" about DS plenty still. My son is six and yes--still learning.

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    1. It's such a journey with Adele. I get that it is also a journey with Brinley, but it's different. There is no lack of love in this house....it's just some days your worries take over and it's difficult when I think about the future. I know that it will work out. Thank you for all of your feedback! Hugs to your little guy. xoxox

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  5. I wrote a huge reply and it deleted :( will try again!

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  6. Thank you for your honest comments. If I could take my baby to pat baby goats at a farm and feed them some hay I would rather do that than take my baby to the hospital and stand in the hall as they take her in for open heart surgery. Heart problems are common for babies with DS. If a parent tries to say they wouldn't change a thing they are not being truthful - that isn't fair to any of their children or the people who support them and their baby. If people aren't honest it just creates problems (like isolation) in the future. Don't try to tell me there is nothing to worry about and my child is perfect in everyway because that isn't supportive or fair.

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    1. Thank you for your honesty. We need to have these moments and share with each other. xo
      Krista

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  7. It can be hard for any parent to accept the fact their children have this kind of condition. Actually, it’s not the condition itself, but those complications that DS might have that's worrying. And I agree, there’s nothing to be embarrassed about having a child with any kind of condition. They are the most precious thing every mother could have. I hope your post could inspire more people, and could set better understanding about DS.

    Paul Quinn @ MedCare Pediatric

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    1. Well said Paul. Thank you! What do you do at MedCare Pediatrics? I looked at the website and it looks great!
      Krista

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  8. I have a new baby with Down syndrome, and I hate the chromosome! She's so gorgeous and strong and already I see her working harder than other babies, learning to breastfeed is still a struggle, she so wants to but her mouth is small and muscles tired. She spent the first 3 weeks of her life in hospital, a big op and so many painful procedures, and we have to give her back for heart surgery in 2-3 weeks time. Who in their right mind would want this? My heart breaks every day whilst it swells with love for this poor child. Of course o want HER, so much I'm terrified of every cry, sniff, rash, and cough - but if I could have her without all this crap, lord yes!!!!

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  9. Hi Dawn....I would love to connect. I'm on Facebook...Krista Rowland-Collins or email Krowland23@hotmail.com. Let's chat! I feel you. I get it. Xo

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