The Miracle Has Occurred

One of my closest friends called the other day. She was looking for information and advice on babies with hearing loss. Her grandchild has just been diagnosed with a hearing loss. She knew to ask me because all three of our kids have hearing loss, too.

I think my friend was a tad bit surprised by my reaction to her news. I wasn't sad or upset. Actually, I was just the opposite. I was happy for their family.  Her grandson's hearing was tested as a newborn before he left the hospital. The baby had a follow up hearing test in an audiologist's office and his hearing loss was diagnosed at that appointment. Straight forward and exactly how it is supposed to go. Her grandson will be fitted for infant-sized hearing aids and he will be fully hearing before he even figures out he has hands. That is such a wonderful blessing! My friend and her family are understandably sad at the moment because they just found out their sweet baby doesn't hear everything. Luckily for them, they have no idea how difficult it was even 25 years ago to get hearing loss identified in children.

I know only because our family was caught in the nightmare of fighting to get our children's hearing loss diagnosed before there were newborn hearing screens, back in the early 1990's when doctor's relied on ringing a bell to see if  a baby could hear. It was stupid, inaccurate, and delayed the proper diagnosis by years.

 I still get upset when I think about the hell I went through to get our oldest child's hearing loss identified, then relived the same trauma with our second child who was also diagnosed late. Thankfully, by the time our third child came, the technology to test a baby's hearing at birth was available and he got his hearing loss identified right away. That early (because newborn diagnosis is SO much earlier than the what was happening) identification made all the difference in the world to our family and our baby. Because of the uniqueness of having 3 children with the same hearing loss and experiencing differing ages of identification, our family was asked to participate in publicizing the importance of testing babies hearing at birth. Of course, we jumped on the opportunity. We wanted to make the nightmare of late diagnosis a thing of the past.

We did several years of newspaper, magazine, tv and video interviews, telling our family story to anyone who asked. It felt so good to be involved with others who were committed to the cause of having every child's hearing tested early in life. We also had our share of mishaps and humiliations during that time. Being judged in the public eye wasn't anything I was prepared for. I was speechless the first time I read Letters to the Editor newspaper comments questioning why we had three "defective children" and how our children were a drain on public health care and education systems. Wowzers. I can only imagine how awful mean-spirited comments would be now, with the internet. The worst of all was what Rob and I like to call our Washington, D.C. Experience. Click the link if you want to know what happens when unsophisticated people with small children show up in Washington. Yikes! My face still burns red when I think about that special time. Let's just say sacrifices were made to bring Newborn Hearing Screens to every state in the US and it was worth it. 

The other big change since my kids were little, is the availability of support for families with children who have hearing loss. When my kids were small there was no easy way to get advice or information. The internet was in its infancy, not that it would have mattered because no programs existed that offered unbiased information for all the different ways hearing loss can be addressed. It is overwhelming and difficult to make decisions regarding communication styles while you are still in the beginning stages of grieving your child's hearing difference. To be blunt, it sucked. 

 I was introduced to 3 other mothers who agreed with me, that the lack of support for families was unacceptable. We decided to form our own organization to help parents and children with hearing loss. We started it at a dining room table with the goal of creating a statewide network of parent-to-parent support. Over the past 20 years, Hands and Voices has grown to be an international non-profit organization that helps families around the world. It just goes to show you what a small group of committed people can accomplish.

I told my dear friend to contact Hands and Voices in her area and they will answer their family's questions and talk through the decisions that must be made. Hands and Voices will be there to support that sweet baby and his parents all the way through infancy, early childhood and school age years. They are not alone and they don't have to figure it all out by themselves. What a precious gift for them! 

Every year I make a point of accepting an invitation to speak at our local university to future audiologists. Before I speak the students watch a one of the informational videos our family made years ago. They see the now outdated clothes and homemade haircuts we sported, they watch me cry as I talk about the difficulties my two older children had because their hearing losses were diagnosed too late. Then they see the difference in our youngest child, the one who benefited from cutting-edge technology that tested his hearing at birth.

The best part of all is when I show up with updated family photos and give them the rest of the story. This spring I was able to say that our two girls have graduated college and their younger brother is following behind with one more year to go. 

 Jennifer, our first child

 Elise, our second child

Yes, it is sad to have a beautiful baby diagnosed with any kind of special need. But the world is changing fast and things are getting better. I am humbled to know that my words from years ago, have actually come true.

"There will never be another child who has to go through what our kids have had to go through. We are so happy and pleased because this is going to change so many lives."  

- spoken at the signing of the 1995 Colorado Newborn Hearing Screen bill, which mandated insurance companies to pay for testing babies hearing at birth.

The miracle has occurred and thank heaven we are alive to see it happen. 






   































http://www.mormonmentality.org/2011/09/25/dressing-for-success-in-washington-d-c.htm

Happy Anniversary

Rob,

Remember our plans for the future while we were engaged? I laugh to think about them now. Oh, how life changed those for us!

 Remember when we attended that university lecture and that researcher said that 87% of marriages with one child with special needs ended in divorce? How about the look on her face when we told her that we had 3 children with multiple special needs? Yeah, she said we were statistically doomed.

 I can't say it was easy or that at times our underwear wasn't hanging out pretty far for all the world to see, but I can say I am so glad we figured it out and made it work for us.
 28 years and counting, baby.
 So proud of you, me and our kiddos.
 Happy anniversary for us, another year we beat the stats.

Love,
Heather

Our wedding invitation photo

When we were young

My Five Mothers

I believe we are given as many parents as we need to learn the life lessons that are necessary for us. I'm not sold on the idea that it is a predestined contract signed before we all showed up on Earth, but I do believe that there are special people to help us along our way. I also believe there are as many relationships as there are people in the world, so there is an overabundance of opportunities to get things right if that is your goal.


I needed five mother's to get me through. Most people only need one and maybe a good second mother-in-waiting to get the job done, but I had five. I am perfectly happy with the women who I chose or they chose me, to teach me the ways of the world. I am lucky because for every difficult mother I had, I was able to find another who was able to erase the pain and give me a boost of needed courage and confidence.


Let me introduce you to the important women who mothered me and made me whole.

1. Claudia - My biological mother. Through no fault of her own, she was only able to mother me until I was 7 years old, and most of that time she had to share me with my second mom. I honor Claudia because she gave my brother and me all that she had. She has suffered unimaginable heartache in losing her children to an unfair system that she had no control over. I can't fathom having her strength to carry on and live a full life without overpowering bitterness and anger against the world. I am so glad we found each other as adults.

Claudia with my brother Rex, circa 1966. Cuties, right? 

2. Dorothy - My foster mother from age 2 to 7. She was a helper mother to Claudia and made it possible for us to have a relationship with our biological parents. Since we weren't her only foster children and she had 3 biological children of her own,  I was just another child in her home. I had freedom in her home because she didn't have rules or much structure. As an adult, I can see that I pretty much ran wild.
I don't have a picture of Dorothy because my computer crashed and I lost all the photos from a research trip to Oregon that Rob and I took in 2009. I did keep a handful of pictures that were still on a cell phone. The only one that survived from Dorothy's house turned out to be very appropriate since Dorothy only vaguely remembered me and my brother. Even though we lived with her for 5 years, we didn't register high on her list of memorable children. We were just a paycheck to her.

The basement door in Dorthy's foster home. Each foster child signed their name.
 There are A LOT of names on that door. 

3. Virginia - My adoptive mother. She raised me from age 7 to 18. I left on my eighteenth birthday and I never spent another night in her house. I don't regret my decision to leave. Actually, I am confident leaving saved my sanity and possibly my life. I learned more from Virginia than I care to remember, but I do appreciate that she taught me the proper ways to fold towels, clean the bathroom, and how to keep my deepest soul protected from people who would do harm to it. Virginia gave me many opportunities to practice that last one. That skill has served me well as an adult. Virginia did not break me.

Virginia with Rex and I shortly after we were adopted. We were sweet looking kids. 

4. Anna - My healing mother. I lived with Anna for almost two years after I left Virginia's house. She and her husband provided me with food, a safe place to sleep and a sense of stability that I had never experienced previously in my life. Anna wasn't a perfect mother, but she was perfect for me, and I love her for that. She was an excellent cook and my hair and fingernails grew like crazy at her house. Anna's simple acts of feeding me, asking me about my day and listening when I talked, healed so much. I thank her for being willing to take on me and my beaten down spirit. She did a good job with me.






5. Barbara - My teaching mother. I was 19 when I married Rob. When I became a mother at 21, the reality of my ignorance of taking care of children was painfully obvious. Barbara (my best friend Stephanie's stepmother) became my phone-a-mother lifeline. She helped with the daily questions that all new mothers had before the internet made parenting one ginormous Google search. More importantly, when my children were diagnosed with hearing losses, and then when we rushed to the hospital on a regular basis for health crisses', her occupation as a nurse was a godsend because she was able to explain medical procedures and medication in ways that I understood. She was a safe mother for me to cry and wail to, and she agreed it wasn't fair. It wasn't fair my children were sick. It wasn't fair that I had already had a crappy childhood and now I was having a crappy motherhood. When would it get fair? Barbara's wisdom was able to calm my fried nerves and give me hope when no one else could. I love her for her lessons about how to survive when you are so worn out you just want to lay down and die. Barbara taught me how to live.

I thank all my mother's for sharing with me what they had. The good, the bad, the hurtful and the sublime. I accept it all with gratitude.

The Pictures Tell the Story

 I graduated from high school in 1985. As part of that experience, I wanted to get senior portraits to share with my friends. I saved money from my part-time job and scheduled an appointment at our local  Olan Mills Photography Studio,  the place that everyone went for all photos.

 My adopted mother, Virginia drove me to the studio and was going to pick me up after I was done. The waiting room was packed with families also waiting to get their photographs taken.  I was told the photographer was running behind, so my appointment was going to be late. Virginia had already sped off in the car, so I couldn't tell her about the delay. I didn't know where she was going or when she would be back. Virginia never had the gift of transparency in her communication, so I was used to being slightly confused as to what the plan was or what to expect next. After a long wait that gave me plenty of time to catch up on my People Magazine reading, it was finally my turn. I was so excited! I brought the four outfits I was planning on being photographed in, and changed into the first one in the bathroom in the studio. I bought all my clothes for the day at a thrift store and I was happy with my stylish looks. I felt good and the first photo shows that.

My first glamour shot

 After the first photo was taken, the receptionist poked her head in the studio and said someone was waiting for me at the front desk. I didn't know who it could be other than my adopted mom, but she wasn't due to show up for another hour. I told her on the way to the appointment what time to pick me up, so I didn't understand why she was early. It made no sense to me, but who else could it be?
Virginia was standing at the receptionist's desk when I rounded the corner into the waiting room. "Ok, let's go,"she said.
I protested, "But I just got started. They only finished taking my first picture."
"That's not my problem. I am here to pick you up and you should be ready to go."
I explained that the studio was running late, and that I wasn't done.
That didn't go over so well.
Virginia started yelling that she WAS ready and she had no intention of sitting around waiting for me while I pretended to be the queen of Sheba.
The waiting room fell silent, even children stopped their impatient whining to watch the spectacle. Hot tears formed behind my eyes as I willed myself to not cry. Virginia was not perturbed by having an audience.  The receptionist's attempt to explain the wait didn't stop her tidal wave of anger. "So you are telling me it is your regular business practice to overbook appointments so that I have to make extra trips to your studio because you are running late? Nice customer service, very nice. I'm sure everyone loves sitting here waiting for hours because of you." The receptionist looked like she had been slapped across the face.
Ashen, she excused herself and went to get the photographer.
When he came out the waiting room, Virginia gave him the same lecture about poor customer service and he reacted as the receptionist did, with a stunned look and stammered apology.
The scene ended with Virginia slamming the door and peeling out the parking lot, and me not knowing how I was going to get home when I was done.

After she left, I couldn't hold it in any longer. The dam burst and I openly bawled from frustration and humiliation in a room full of strangers. The photographer led me back to the studio and let me cry for a few minutes. He gently said that we had to finish taking my pictures because the others were still waiting. I dried my tears and fixed my make-up. The show must go on.

My eyes were red and I struggled to find a smile. 

My eyes were still red, but my color was coming back to normal. I still couldn't manage a sincere smile. 

We cut my session short. I was no longer interested in changing outfits one more time. We ended with a photo that perfectly captured how I felt. Clear-eyed, but determined to find a way out of my adopted parents house.
 I was done.


Happy Freedom to me! 

More Graduation Fun

Like all of you, I am a sucker for sweet movies that teach me something and have a happy ending This video is my family's version of a sweet movie about education. Be prepared to laugh, to cry and to be a bit amazed. I wrote just a few pages in Ezra and Hadassah: A Portrait of American Royalty about my kids and their challenges. I certainly didn't cover the subject in full. That story will be told on another day. Right now, you get to enjoy a small glimpse into my kids lives by watching a video we made to celebrate our last child graduating from high school. We are getting ready to celebrate two college graduations in mere weeks, with the last college graduation coming next year. I am grateful we have this opportunity to celebrate again. Many young people with their physical challenges don't have the chance to graduate from college. We are very lucky.

Sit back, relax and enjoy our family blast-from-the-past.

Also, don't forget my gift to you is Ezra and Hadassah is only 99 cents on all e-book platforms until May 16th, when you will get to see pictures of my two girls in their college graduation gowns. So happy, so  proud and once again, so relieved. We did it, we really, really did it.