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.
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:
Medical Problems Associated With DSWhile 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.