wolfhirschhorn.org

This site 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 series that praises the very people that give up all they have for their child with Wolf-Hirschhorn Syndrome.

This story profiles Kimberly Schultz, mother to Angel. Here is what she had to say…

Kimberly Schultz

WHS.org: When was Angel diagnosed with WHS?
KIMBERLY: Angel was diagnosed at 15 months of age by a geneticist.

WHS.org: Who communicated the diagnosis to you, and how was it done? How did you feel at receiving this news?
KIMBERLY: The genetics office called with results. They wanted us to come to an appointment to get results but they are over 2 hrs away and it was just before a holiday weekend and we couldn’t go there. They were pretty confident the diagnosis would be confirmed with blood work so they actually prepared us at the first appointment. We were disappointed at the confirmation of the diagnosis, but also determined that we would do all we could to help her reach her best potential. We were also nervous because she was still a foster child in our care & we were confident that her birth mother could never manage to care for her well with so many struggles to come.

WHS.org: What is the first thing you did when you heard the news?
KIMBERLY: On my way home from the first genetics appointment I called my husband with the name of the syndrome and he started looking it up on the internet.

WHS.org: Once you had the diagnosis, what steps did you take in attempt to learn more about the condition?
KIMBERLY: Internet research! Tons of it. Searched until we found the 4p- support group because our wise geneticist said we’d get more & better information from those parents than from him.

WHS.org: How did you communicate this news to your family? Your other children? How did they receive the news?
KIMBERLY: We just told family as much as we could about it, including getting the parent handbook on the syndrome. That was full of great info. We had older children, preteen & teen. They were saddened at her future struggles, but had already fallen so in love with her that they were as committed as we to help her in any way.

WHS.org: What life adjustments did you have to make to accommodate Angel’s condition? Would you do anything differently?
KIMBERLY: We made lots and lots of therapy appointments, have remodeled our home, added a sensory room, and learned a whole new language. As she has grown we continue to make adjustments, acquiring assistive devices, altering our days so as not to overwhelm her with her sensory issues.

WHS.org: How has WHS impacted the lives of your other children? How do they treat Angel and how do they feel about your relationship with her?
KIMBERLY: Angel is most adored by her siblings. She’s a cutie pie who generated a lot of hugs. She doesn’t take her siblings’ toys so she has favor with them. And because kids like to help, they love to help her. Since her diagnosis she has acquired several more siblings. The boys are her favorites. She is never mean to her two 8 yr old brothers, but has been known to hit and pull the hair of her two younger sisters.

WHS.org: Do you feel her WHS has impacted their views on others with disabilities? If so, how?
KIMBERLY: I do think it has impacted their views. They all seem drawn to other disabled children they see in public. They don’t think it’s weird or strange. It’s such a part of their lives that it’s normal to them and they’re not intimidated by disabled children as some other children can be.

WHS.org: Has WHS affected your life negatively? If so, how? What sacrifices have you made to ensure Angel has the best care?
KIMBERLY: Probably the only negative impact has been the lack of freedom of going places. We need particular babysitters and if we take Angel we need to make sure there is accessibility.

WHS.org: Conversely, how has WHS positively changed your perspective? What are the top 3 things that Angel has brought to your life?
KIMBERLY: Oh, we are so very positively impacted! Our perspective and patience have been stretched. We don’t take so many things for granted anymore. Those milestones that you don’t even really remember well from the other kids are such a struggle to reach that when it happens it’s a celebration. So, let’s see, top 3 things: 1. More compassion for the disabled. 2. Awareness of disabilities & accessibility. 3. A huge love for kids with disabilities.

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?
KIMBERLY: Oh my eyes have been opened to the little things you don’t think about. Things like how would someone in a wheelchair get inside this store without an automatic door, and the number of public places with stairs but no ramps or elevators. And even healthcare….when she’s admitted to the pediatric unit they actually don’t have her size diaper/pull-up. It’s a necessity for her, but they can’t provide it. We bring our own. And it has made me really keep an eye out for those who may think she is not entitled to the same care & treatment because of her disability. At this point most of the health care providers think she’s great so I haven’t had to do battle there.

WHS.org: Was Angel involved in an early intervention program? Was it beneficial? What did you like best about the program, and which aspect(s) helped the most?
KIMBERLY: She was involved in early intervention. I think the best part was that they included me in the therapies and taught me how to carry over activities for when they weren’t there. I don’t believe 2 or 3 thirty or forty-five minute sessions a week will get them to their potential. The parent has to carry over those activities.

WHS.org:Have you prepared a long-term care plan for Angel, one that ensures she will be financially and emotionally cared for?
KIMBERLY: We have plans in mind and discussed but nothing legally done yet. Our goal is to get that done this coming year.

WHS.org: How have you personally coped with Angel’s condition? How has it changed you as a person?
KIMBERLY: I have really learned what advocating for your child is all about. Sometimes it’s hard, and stressful, and there are tears to release tension. Not sad tears, just weary tears, or from frustration from the red tape of trying to get services or equipment she needs. That’s the most frustrating part I think. The red tape & hoops you have to jump through to get her what she needs.

WHS.org: What has been your largest sacrifice now that you have a special needs child?
KIMBERLY: The alone time my husband and I get. We actually have several children we have adopted who have special needs. In addition to Angel we have her brother who has autism & mild CP and her sister who remains undiagnosed except for ADHD but is probably dealing with a mood disorder and two other adopted children who are pretty easy in comparison. So alone time is infrequent. Date nights are cherished and overnights away happens but once a year.

WHS.org: What would you recommend to a parent that is expecting a WHS child?
KIMBERLY: That child will absolutely rock your world. We had many nights of very little sleep, fussy baby who got sick a lot and got sicker than typical children, projectile vomiting, and my worst fear, seizures. Angel moved in with us as a 2 month old baby when she came into foster care. We adopted her at 2 yrs old. If I knew all before she came, especially the seizures, I may have said no. But the Lord knew what he was doing by letting us fall in love with her first and adding the info a bit at a time. I wouldn’t trade places with anyone for the world. It’s all worth it and we have grown more than she has. She’s the best hugger ever! I remember a time a cashier commented how quiet Angel was at about 5 yrs old. She said I was lucky. I wanted to tell her I’d give anything to hear her say “mommy” or “i love you”. Now at 7 she’s saying mommy very clearly, in addition to Elmo and several other words. The words are coming in their own time. I love the quote from The Memory Keeper’s Daughter about taking away the timeline for milestones and letting the child just do things in their own time. They just do it on a different timeline. Just enjoy the time you have with these precious little ones who are just kids first, with disabilities second. I tell babysitters that she’s just a child, and a thrill seeker at that, & not to be nervous around her.

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Thanks Kimberly for sharing Angel and her life with all of us!

-Kevin