wolfhirschhorn.org

As you know, this site primarily focuses on the children with Wolf-Hirschhorn Syndrome. What we sometimes forget about are the parents and moms that carry the load for our kids. The “Parent Profile” is a new series that praises the very people that give up all they have for their child with wolf-hirschhorn syndrome.

Our first story profiles Chrissy Rivera, mother to Amelia. Here is what she had to say…

Chrissy Rivera

WHS.org: When was Amelia diagnosed with WHS?
CHRISSY: Amelia was diagnosed at three days old by the geneticist at the hospital.

WHS.org: Who communicated the diagnosis to you, and how was it done? How did you feel at receiving this news?
CHRISSY: The geneticist told me when I was in my hospital room and my cousin was with me. My husband was at work and wasn’t with me when she told me. I remember how proud she was of herself that she was able to diagnosis her by her appearance because it is so rare. She actually said, “ I deserve a pat on the back for figuring this out.” I was hysterical crying because she just told me something was wrong with my baby and she was beaming with pride because of the diagnosis. It was a strange scene and I was glad my cousin was at least with me to relay the information to my husband because I couldn’t speak when she left.

WHS.org: Once you had the diagnosis, what steps did you take in attempt to learn more about the condition?
CHRISSY: That night my husband and I went to the NICU family room and Googled the syndrome. We were in shock at what we read. I couldn’t get past the two-year life span. After that day, I didn’t look again on the computer for information about the syndrome until a friend emailed my husband and said he came across a blog with a girl with the same syndrome. Kendall’s blog was the first child I saw with WHS and that gave me some hope for the future.

WHS.org: How did you communicate this news to your family? Your other children? How did they receive the news?
CHRISSY: When we told our families about the syndrome, we compared it to Down Syndrome. This was easy for my older son because he has a friend in school with Down Syndrome. My younger son was only two when we brought Amelia home. We also told everyone that we didn’t know how this was going to impact her life and she was going to write  her own book on what the future holds for her.

WHS.org: What life adjustments did you have to make to accommodate Amelia’s condition? Would you do anything differently?
CHRISSY: I had to think about this question for days; back and forth about whether or not to write about this topic. I have written hundreds of entries in my journals and considered posting on this site about this topic. I think our biggest life adjustment was our marriage. We were married for eleven years when Amelia was born. Like most marriages, we had our ups and downs, but marriage is easy when life is easy. Things started to get really bad between us when Mia was about three months old. I had taken on the role of doing everything for Mia. Doctors appointments, phone calls, letters, feedings, medicines; I needed to control everything with her. I was on this mission to “fix her.” Joe and I separated when she was five months old. I did not have the energy to care anymore about our marriage. I was relieved that there would be one less person I would have to take care of.  Keep in mind, this is only my point of view about what happened and Joe may feel differently. Either way, having a special needs child changes your whole life. We went twice to file for divorce and backed out both times. Finally, after about a year, we decided to give our marriage another shot. We now communicate a lot more with each other and appreciate each other more than we ever have. There is no one who understands how I feel about our children except for Joe.

WHS.org: How has WHS impacted the lives of your other children? How do they treat Amelia and how do they feel about your relationship with her?
CHRISSY: WHS has had a positive impact on my other children. During Amelia’s first year, my older son would ask a lot of questions about her future. I told him honestly that I had no idea what she was going to be able to do. My younger son probably can’t remember what life was like before Mia. It is routine for him to visit her in the hospital, wash his hands before he touches her, and to keep his distance when he is sick. I think they treat her a little too normal sometimes. Nathan will play a little rough with her, and Joey will tell her to be quiet if she is making noise during one of his shows. I yell at them and pretend I am shocked, but secretly I love it!

WHS.org: Do you feel her WHS has impacted their views on others with disabilities? If so, how?
CHRISSY: I definitely feel WHS has impacted their views on others with disabilities. It has opened the door for so many important conversations about how one person can impact a life regardless of their abilities.

WHS.org: Has WHS affected your life negatively? If so, how? What sacrifices have you made to ensure Amelia has the best care?
CHRISSY: I do not feel WHS has negatively affected my life at all. Sometimes I do get sad about the syndrome if I think too far into the future. But I have learned to appreciate every day and focus on today, and not next week or next year. This has affected all aspects of my life, not just Mia. I have learned to live in the present, which is something I was not doing before she was born. I was always rushing around and always stressed about some of the stupidest things.

WHS.org: Conversely, how has WHS positively changed your perspective? What are the top 3 things that Amelia has brought to your life?
CHRISSY: The top three things Mia has brought to my life…1. Peace- I feel such a calm when I am holding, talking, and playing with her. 2. Hope-Not to sound too cliché, but I see a lot of the WHS children on the blog and feel such hope for the future. If so many medical professionals can be wrong about so many things with this syndrome, then I know never to believe any negative information I am told about her syndrome. 3. Patience-I will wait for the rest of my life for her to sit by herself, stand on her own, and talk to us with her words. There is no rush. I am enjoying each day with her.

WHS.org: How has raising a child with special needs impacted your perspective on healthcare and your views on how the disabled are treated in our society?
CHRISSY: When Amelia was born in March, I was on maternity leave from work until September. I am a teacher and knew I had to go back because I hold the health benefits in the family. We were denied home nursing because Amelia was not “needy” enough. I talked to several social workers about getting her into a medical day care. The problem was that we had a private insurance and our insurance denied her from attending. I had to get approved for Medicaid for her to attend. This was almost impossible because my husband and I both worked and we had insurance. In order for us to get her Medicaid in New Jersey, we had to have less than six thousand dollars in assets. I spent all summer making phone calls, writing letters, and going to many state agencies to get her approved. She was approved by the last week in August right before I went back to work. It was very frustrating because if I quit my job I wouldn’t have any problem getting approved. I felt like the state was penalizing me for having a job. It took me another two years of phone calls, letters, and visits to get approved for respite care in the house. All the state agencies kept telling me that she was not “needy” enough.

WHS.org: Was Amelia involved in an early intervention program? Was it beneficial? What did you like best about the program, and which aspect(s) helped the most?
CHRISSY: Amelia did receive Early Intervention from the time she was two months old. It was beneficial because it taught me a lot of exercises to do with her to help her build muscle tone.

WHS.org:Have you prepared a long-term care plan for Amelia, one that ensures she will be financially and emotionally cared for?
CHRISSY: I have not prepared a long-term care plan for Amelia. One of my coping mechanisms with WHS is living in the present and not thinking too far into the future. I know this can be detrimental to my children, but right now, I don’t want to think about that part of her life. It is too overwhelming for me. I know this is wrong.

WHS.org: How have you personally coped with Amelia’s condition? How has it changed you as a person?
CHRISSY: I have personally coped with Amelia’s condition by writing. I have always kept a journal and when Amelia was born I found this as a great outlet for me.

WHS.org: What has been your largest sacrifice now that you have a special needs child?
CHRISSY: Now that we have home nursing there are very few sacrifices we make because of Amelia. Before home nursing, I think spending one on one time with the boys was impossible. There were sporting and school events one of us missed because it was too risky to take her out into public places during flu season. She was sick a lot and in the hospital a lot during her first two years.

WHS.org: What would you recommend to a parent that is expecting a WHS child?
CHRISSY: I would recommend that a parent talk to as many parents as possible and not rely on just what the doctor says. The Doctors have made many mistakes when it came to Mia, and sometimes I caught the mistakes in time and sometimes I didn’t.

I want to personally thank Chrissy for sharing Mia and her life with all of us. Thanks Chrissy!

-Kevin