My husband and I had decided to try and have another child. Amanda had just turned 2 years old and we wanted to give her someone she could play with and we didn't want there to be too much of an age difference. We thought it would be good for them to grow up together.
I will never forget the day that I found out I was pregnant. It was June 15, 1994. I have to admit I was a little scared. Being a parent of one child is one thing, and a parent of 2, well I was starting to wonder whether or not we could handle that. I sat there in the lobby waiting for the results to come back. Nervous and anxious all at the same time. The nurse walked up to me and said, "Pam the test results came out posotive. I started crying. I was on an emotional roller coaster. Pregnancy does that to a person.
As the weeks went by I started feeling the baby move and grow inside of me. A mother falls in love with her baby long before the babies birth. Feeling a little person grow inside of you is such a miracle. About 3 months into the pregnancy they found out that I was gestational diabetic and put me on a diabetic diet to control my sugar levels.
After weeks of being on the diet my sugars were still escalating and I was sent to a hospital in Lousiville, KY to take classes on giving myself shots of insulin. At first I said, "There is no way I can take a needle and give myself a shot." But you know what, I did. Because a mother will do anything for the well being of her baby and I knew that my sugars being high were harmful to the baby. The love for my unborn baby gave me the strenght to do what I had thought that I couldn't. After many OB appointments and lots of ultra-sounds the OB came to the realization that the babies femors weren't the right length according to the rest of the babies measurements. At this point I was really scared. The doctor sent me to a hospital in Louisville, KY to have a more accurate ultra-sound done by a team of specialist. I can remember lying there on that table fearing what the examiner was going to tell me. By the time the test were all all done they had confirmed my OB's results and they were accurate. There was something very wrong with my baby, but they weren't sure just what. I think that was the worse part. Not even the doctors (specialist) could tell me what was wrong with my baby. I remember all I could do was cry and ask myself the question that even the doctors couldn't answer, "What is wrong with my baby?" After a few minutes they sent a team of genetic counselors in to speak with me about what might be wrong with the baby. All I wanted to do was go home and cry a river, and that is what I did.
In the meantime they had sent the results of the ultra-sound to my OB for him to read. I will neverforget on February 14, 1995 I got a call from my OB and he told me that he thought that everything was going to be just fine with the baby and for me to quit worrying. I look back on it now and I know that he was just telling me that to keep me from being so stressed. It helped a little bit but still in my heart I knew that my baby has some very major problems and not even the most renowned doctor could make me think anything different. I knew and he knew that all the stress that I was under would make my sugars go higher and that would just add to the problems the baby already had. I was so scared.
Being gestational diabetic the OB had told me that the possibility of taking the baby C-Section and 2 weeks before the actual due date was great. On my next appointment my OB set up for me to have an Amniocentesis. He set the appointment up for February 20th and if it showed that the babies lungs were developed enough to be born without complications then the C-Section would be scheduled for the next morning. We waited that afternoon for the Amnio results and they came back saying that the baby would be fine if born at this time.
I will never forget that night as long as I live. We stayed at a Hotel in Clarksville, IN so that we would be closer to the hospital. The C-Section was scheduled for 6 a.m. I recall not being able to sleep, pacing the floor of that Hotel room and praying to God that everything would be okay. But I had this gut feeling, one I could not shake. Everything was not going to be okay. But my prayer remained the same.
The morning was here and it was time to head for the hospital. Boy was I nervous. I had taken the option of staying awake during the surgery so that my husband ‘JD’ could be in there when the baby was born. I had also signed papers a couple of months prior to have a tubal litigation done right after the birth. I recall lying there on the operating table and the DR was talking to his colleagues about going to an antique auction and I remember saying to the DR, ‘hey don’t forget about those tubes’ :~), he said ‘I haven’t.’ With in a few minutes time our baby girl was born. We fell in love with her immediately. She was so beautiful in our eyes. She was also very tiny. She only weighed 5lbs. 13 oz. and was 17 1/4 inches long.
Within a couple of hours after her birth they started bringing in specialist to look at her. Cardiologist, dwarfism specialist, optometrist, bone specialist, etc. We were really scared. At this time we had not yet chosen a name. We thought for sure that we were having a little boy and had not even picked out a girls name. So for now the DR and Nurses would just call her ‘baby Meyer’. They put her through a series of test, x-ray after x-ray. When the test were complete they still had no idea what was wrong with our baby. All they knew was that it had something to do with dwarfism, 3 holes in her heart, cataracts, bone calcification, and an eating disorder. They told us that to find out exactly what ‘baby Meyer’s’ diagnosis was they would have to do a series of test, blood culture, urine sample, and a skin biopsy and have them sent to Johns Hopkins in Baltimore, Maryland. We agreed to the 3 test but also informed the medical team that our baby would not be used as a ginne pig. The test were done and sent off tothe medical center and we waited for the results which would not be back for 2 weeks.
During this time my husband and I done alot of crying and knew we needed to come up with a name for our little girl. This was one special little girl so she had to have a very special name. My husband picked the name Heather and I picked the 2, yes 2 middle names. I wanted to name her after my two older sisters, so that is what I done. Our baby girl now had a name. Heather Yvonne Kay A long name for a very little girl but it fit her so well.
As the days went by Heather had a big problem. She would not eat. So the DR’s brought in a specialist on eating disorders and with her she brought this very special little bottle that was called Haberman Feeder. You had to literally pump the formula into her mouth and hoped that she would swallow. But after a while Heather started eating a little bit, but not enough to satisfy the Dr’s.
In the meantime we had found out that the person that had done the skin biopsy had put it in the wrong solution causing it not to grow. They ask if they could do that test again and we refused. I couldn’t bare to put Heather through that anymore. That test was the most horrible ordeal ever.
One morning the Pediatrician that was handling Heather’s case came into my room and told me that my husband and I needed to come to a decision about something. He said that we needed to decide that if it became necessary to put Heather on life support would that be an option. Well I was devastated, in shock, and falling apart. I cried another river, composed myself and called my sister ‘Gayle’ who just lived within minutes of the hospital. She came to the hospital immediately and tried to comfort me but I was an emotional wreck. How could we make this decision? That evening my husband returned to the hospital after he got off work and I broke the news to him about what the pediatrician had told me about the life support. I remember neither of us could say a word. We just sat there in silence holding each other. After much thought we decided that if it came down to life support, well, we would not want Heather to be alive like that. Thank God we never had to take that action.
After I was released from the DR’s care I still lived at the hospital. The only time I went home was at night and that was because they had told me that I was not allowed to stay nights. So my sister, which lived there close let me stay with her and her husband. I spent all my time in the Nursery, just sitting there talking to Heather and rocking her. I recall one day a nurse walked up to me and said, ‘You know all you can do with a baby like Heather is take her home, feed her and make sure she doesn’t dehydrate’. I looked up at her and not saying a word but I know she got my point. What I wanted to do was slug her. How could anyone say something like that to a mother. I thought lady you have no idea what love is do you. I was so angry with her. I then went to the supervising nurse and reported what had been said to me. I stressed to them that I didn’t think that she should be working in any part of the hospital and that I did expect some course of action to be taken. Yeah right, Nothing was done.
That same nurse, on the day before Heather’s release from the hospital, came up to me once again and told me that, ‘You know they have homes for children like this.’ Well that was it, the straw that broke the camels back. I once again looked up at that nurse, only this time I spoke. I told her this, ‘I will die taking care of my baby.’ She didn’t have a reply, only silence, and walked away.
The day was here. The test results from John Hopkins Medical Center in Baltimore, Maryland were back. I recall the pediatrician taking us off to the side and telling us the results were back but that it was not good news. Once again I fell apart. The test had confirmed that Heather had a very rare genetic disorder called RCP. There are 6 forms of CP and Heather had the most severe type. At this point he proceeded to tell us that the life expectancy of a child with this type was 1 year. We were devastated. I also remember the DR putting his arms around me and telling me how sorry he was to have to bring us this news. He then signed the papers for Heather’s release, therewas nothing more they could do, only time would tell.
I remember the ride home, crying all the way, terrified that our baby would not be with us long and being so angry at God for giving us something less than a perfectly healthy child. The crying went on for months, day and night. But then one day, out of the clear blue sky, a thought came to me. I realized that I had been given a very special child and that God must have thought that we were very special parents to give her to us. From that day on I enjoyed and cherished every moment I had with my sweet angel ‘Heather’. Just one of her smiles could and did light up a room.
On her first birthday we felt such relief. She had proved the DR’s wrong. This was a milestone for her and us. During this first year Heather had been in the hospital 10 times. Most of them were because she would get a virus, quit eating, and because she didn’t take alot of fluids, would then dehydrate. Only 2 out of the 10 were respiratory infections.
Taking care of Heather was a 24-7 job. But we did it with love, and enjoyed every minute that God let us keep her. Alot of work goes into taking care of a child with special needs and with Heather it was like having a new born baby all the time. She ate every 3 hours and only took 2 ounces at a time. I have to admit that sometimes those 3am feedings were really hard, though I don’t remember ever complaining. It was just something that we had adjusted to and it was part of our daily schedule. Thru the week I would do most of the feedings and then come the weekend and my husband ‘JD’ would take over. He enjoyed the time that he got to spend with her. A daddy and his little girl at 3 in the morning talking to each other. Those are special memories.
On her second birthday the media got ahold of the news that we were throwing her a big party at a place called Circus-Circus. A pizza place in a nearby town. There were 25 people at her party and we were feeling so blessed that God had given us another year with her in our life. With not as many hospital stays and not nearly as many illnesses, we thought, ‘Heather is the one that is going to beat the odds’. Shortly after her 2nd birthday the girls and I took a trip to NC. While we were there I decided to put Heather on Natural Herbs. They did wonders for her. We seen improvements in her eating and range of motion. Even the physical therapist noticed a big change in her. It was like a miracle drug.
Heather had already proven the DR’s wrong. They had told us that she would always have the mind of a 3 or 4 month old baby. But when she started saying ‘momma’, well I thought to myself, ‘what 3 or 4 month old baby says that?’ Then shortly after she started saying momma she said ‘dada’. This was another milestone for her. And for us it was another sign that Heather was going to beat the odds and prove the DR’s all wrong. On Jan. 25, 1998 Heather said yet another word. I was sitting in front of the computer holding Heather, talking to her about her sister Amanda. When out of the blue Heather said, ‘Manda’. My sister was sitting beside of me and both of our mouths dropped to the floor. I started to cry and I knew in my heart that Heather was going to beat all odds. She was a fighter. She was strong, determined, and very stubborn. I just knew that nothing was going to happen to my Angel.
On February 21, 1998 we celebrated Heather’s 3rd birthday. I recall thanking God for letting us keep her another year, but then again I thanked him everyday for letting us keep her. I read once in a book that if your child with RCP makes it to 3 they are more likely to make it to 5. With that in mind I never thought anymore about losing her. In fact I made the statement that ‘Wow, she is 3 and we get to keep her for at least 2 more years. Boy was I wrong. Now comes the hardest part of this story.
It was about 11 p.m. on Friday night. May 1, 1998. I had been chatting with some friends online in Yahoo. I was kinda tired and I had a big day planned on the 2nd. I was going with some friends to see Garth Brooks in concert. So I signed off to my friends in chat, signed out, and shut the computer down. I walked into the living room and there sat my husband and Heather sleeping in a chair. This was a common occurrence with Heather and her daddy. I remember looking at the two of them and thinking, ‘Awww how sweet.’ I then gently touched my husband on the shoulder and ask him to put Heather in her bassinet for the night so she would sleep better. He did and I proceeded to go on into bed myself. Well in the process of putting Heather to bed, she woke up. She was kinda fussing so I asked my husband to get her for me and I would lay in bed with her until she fell asleep. I recall the only light on was the kitchen light but it was just enough light for me to see Heather’s face. She didn’t have her contacts in cause I had taken them out to be cleaned, but I am telling you she was looking right at me. I kinda thought that she might be hurting so I put my hand on her little leg and started massaging it. Talking to her and telling her how much I loved her. Then I took her hand in mine and started gently rubbing it with my fingers gently. She loved it when I would do that to her. I talked to her for about an hour or so and she finally drifted off to sleep. So I got up out of bed, picked her up, kissed her on the check and whispered in her ear "Sweet Dreams My ANGEL, and gently layed her back in her bassinet.
Now comes the really hard part of this story.
I woke up, looked at the clock and it said 6:12 a.m. I thought now Heather always eats at 6 a.m. sharp, why isn't she up yet? So I get out of bed, walk over to her bassinet. I couldn't believe what I saw. So I rubbed my eyes, focused them real hard on her but what I saw was real. Heather wasn't breathing. I took my hand over her very still body but nothing. I screamed for my husband, "Honey Heather isn't breathing". I picked her up, placed her on my bed, my husband come running into the room, started CPR on her while I called 911. Believe it or not just for a second I could not even remember the number for 911. When something like this happens you just don't even hardly remember your own name. While I was on the phone I recall watching my husband give CPR to my babies lifeless body. I was in panic mode "screaming, no not my Heather", please God don't take her from me. The lady on the phone tried to calm me down but I just couldn't. My baby wasn't breathing and I was scared to death.
This had always been my biggest fear. Heather falling asleep and not waking up. My nightmare had come true. The ambulance got to my house but it seemed like it took them forever. They came in, went back to our bedroom where Heather was, picked her up and took her out to the ambulance. I followed behind them not wanting to let Heather out of my site. One of the persons told me to get in so I did. Like I was going to let them leave without me. I don't think so. That was my baby they were taking away. All the way to the Hospital I kept asking them "Is she breathing yet". They replied, "No, not yet Mrs. Meyer". I started screaming once again, "No not my Heather" over and over again.
We got to the hospital and a nurse was waiting outside the ER to take me inside. She had to hold me up. My legs felt just like jell-o. They took me to a small room just across the hall from where they had taken Heather. The Hospice Support Staff arrived shortly after I did and Sr. Renee came into the room where I was and just held me. I was an emotional wreck. Then shortly there after Heather's doctor came into the room where I was, head hung down, and said, "Pam I am so sorry there is nothing we can do. We tried everything. "Heather is gone". A huge emptiness came over me and I remember just sitting there staring, shocked. Then the tears came. I must have cried a river that day and I still am. Well then I asked the doctor if I could go be with Heather. He said, "Yes", and lead me to the room where Heather was. When I walked in the room I know my heart quit beating. I almost collapsed and they had to hold me up. She was lying there so lifeless. They had placed a little puppy across her, like she was holding it in her arms. I leaned over her, cried and cried and cried. My baby was gone. My husband had not yet arrived. I picked her up, walked over to a nearby chair and sat there holding my baby for what I know was the last time. She was so cold and I kept telling her how much I loved her and that I always would.
My husband arrived with our daughter Amanda, and my sister Lisa. That room was so sad. Pretty soon the room started filling up but yet it felt so empty. My baby was really gone. The staff at the hospital let us stay in the room til the morge came and got her. I know it must have been at least 2 hours. Or it seemed that way to me. But when they took her I had to get out of there. There was no reason for me to stay there now and I wanted to be as far away from that place as possible.
Then came time to make the funeral arrangements. I knew this was not going to be easy but it was a step that we had to take. I just kept remembering what Sis "Jeni" had told me about baby steps. Thank you Sis you have been such a help to us thru all of this. The easy part was picking out her dress for her to be buried in. She had many but there was this one with flowers all over it that she always looked so pretty in.
The next day I spoke with the funeral home director and asked them if I could please be the one to fix her hair. There was no way I was going to let someone else do that. The day came that I was to go up to the funeral home and do that. At first I didn't think I was going to be able to do it, but I really wanted to do this one last time. I cried the entire time. But with the love and support of my husband, sister, and sister-in-law I did get it done.
The day of the funeral was here. I remember walking into the funeral home with my husband and Amanda, and a great big hole in my heart. One that I was sure would never go away no matter how much time passed. There were people already there but they let us go in first to have our time alone with her. After about an hour or so we decided to start letting the other people in to view her. She was so beautiful, like a porcelain doll laying there. All I could think was how she had come to this world with broken wings, how much we loved her, missed her, how much we wanted her back, but then realizing that now her wings weren't broken anymore.
People kept telling me how much better off she was. That did not make it any easier so I wondered why they kept telling me. Yes it was true that she was better off, but I was not. She was everything to me. The person that needed me most in life was gone and there wasn't a damn thing I could do about it. I was so numb. Like I was there but not really. Like a nightmare, feeling the need to wake up.
She had a beautiful ceremony and then we went on to the cemetery. Now this was hard. Knowing that as soon as we left the cemetery all I would have left of her were memories and pictures. I would never get to look at her again. The minister read a couple of poems at the cemetery and then it was over. I just sat there crying, unable to move. I did not want to leave my Sweet Little Heather there all alone. My husband and some friends had to help me to the car. When we got back to the house there were lots of people there. All I could think was I wish everyone would just go home and leave me alone so I could cry.
It is October 14th. now, 5 1/2 months have passed since your death and I still have this anger inside of me. I keep asking myself why did MY baby have to die? Why couldn't it have been someone else's child. Maybe someone who didn't want their baby. God knows there are lots of those kinds of parents out there. I am just having a really hard time understanding why God would give us something so PRECIOUS to love and then only let us keep her for such a short time. It just doesn't seem fair. But then I guess alot of things in this life aren't fair. I just miss her so much and I cry as much today as I did the day she passed away. I know that she is with me all the time but my arms ache to hold her and my eyes want to see that beautiful smile she always gave me. If only I could spend one more day with my Sweet Little Angel "Heather". Oh so many things I would do differently. God I wish this empty feeling would go away and all these tears would stop. Heather! Mommy, Daddy, and your big sister Amanda miss you and love you so much. I know you are in a better place now but that really doesn't help the emptiness or grief that we have in our hearts. Yes there are memories, all good ones, but it is so hard for Mommy to think of those days with you without crying. Oh how I miss you. My days are so long now without you in them and my nights are sleepless. Just knowing that you aren't in your bassinett all tucked in cozy, well I can't even sleep in my bedroom. Lots of nights on the couch for me since you died. I guess in time that will all change I am not really sure. I miss those 3 a.m. feedings and you not wanting to go back to sleep for an hour or so. Staying up and playing with you til you got tired and wanted to go back to bed. Three short years of taking care of you night and day, feeding you every three hours, giving you your daily bath, just everything I use to do for you and with you.
May 19, 1998 we found out that Jessica (your first cousin) is pregnant. Little did we know that when they were here for your funeral there was a special little angel being created.
I know now for sure that for every death there is some special little person being born. No Heather, Jessica's baby will never take your place but it does make mommy happy to know
that someone cared for you so much to name their child after you. You touched so many people's lives and for that we are thankful. Love Mommy!!!
It is almost December and Christmas just isn't going to be the same this year or the years to come. I miss her as much as I did the day she died. I just wish that I could fill this great big empty hole in my heart with something. But I know nothing or anyone could ever take her place. She was one of a kind and so easy to love.
I remember how I use to hold her and how tiny she was for her age. And at times I can still feel her in my arms how perfect she fit into them and how at age 2 1/2 years I could still carry her around with one hand. Why didn't I see this coming? How could I have been so blind? Yes from day one we were always told that she would not
live long but way back in my mind I thought they might be crazy, Dr's had been wrong about many things before so I wasn't really worried. But as a mother I feel like I failed her. Good Mommy's have this instinct when something is wrong or about to happen. I guess after all is said and done I am not a very good mommy. I didn't spend
enough time with her, holding her and playing with her. Heather slept ALOT especially the last couple of months that she was with us. Most of the time right after she ate she would fall asleep. Sometimes I would sit and hold her while she slept but other times I would put her on the couch or in the floor on a blanket. I think back now and
wish that I had held her when I could, cause now I never will again. SO MANY REGRETS.
Entry Date: February 3, 1999
Well Heather you now have your papa Meyer with you in Heaven. Guess you could say that makes mommy feel a little bit better but sad at the same time cause we miss you both ohhhhh so much. Just remember you have to help take care of papa and set him straight every now and then. * smiles * But now I know that papa will help you learn the ropes up there...Just take care of each other okay...and remember to visit us every now and then...*which I know you won't forget that*...Oh and quit giving your name sake *Heather Darian Elise* ideas...seems she is picking
up some of your poopy habits...LOL...I love you my sweet angel and I always will...Till next time...*Angel Kisses*
Entry Date: February 20, 1999 : Where do I start? Hello my Angel! Well it's almost your birthday. Tomorrow as a matter of fact and it seems kinda weird that you aren't here to celebrate it. I wanted to let you know that the time of celebrating is past, but the time of remembering will always be here! We are going to drag out the family videos and watch them on Sunday. I just know I am gonna cry. I miss you so much Heather. I cherish every memory I have of you "my sweet angel". Well I guess that's about it sweetheart. Mommy, Daddy, and Amanda Loves you very much and we hold you close to our hearts. Love, Mommy
Well Heather, here we are again having another Holiday without you. But you are in our hearts and thoughts continuously. I wanted to make you something really special for Easter and this was what I came up with. I hope you like it. I know you can see it from up there in Heaven and you know mommy made it with alot of love in her heart. I love you sweetheart!!! Daddy says to tell you Hi and that he loves you and misses you too. Amanda draws you pictures all the time and I don't think there is a day that goes by that she doesn't say something about her little sister and how much she misses you. She cries sometimes but mommy and daddy tries to comfort her and make her feel better. The pictures that she draws always has you in them, but then you already knew that didn't you?...*S*
Well sweetheart mommy has to go now, but I know you will be going with me. Until we meet again...Love N AngelHugs...Mommy!!!
Entry Date : May 1, 1999 - 11:04p.m. ***To my darling little Angel, Heather. Well baby it has been a year since you went to Heaven. But you haven't left us cause we still and always will hold you near and dear to our hearts. There isn't a day that goes by that I don't think of you and wish you were back here with me so I can see that precious smile, those cute little teeth shining through, and that giggle you have. Oh I can hear you now, laughing cause your sister said somthing funny, or because momma was tickling your side, or when daddy would swing you really high in the air in his arms and you would come down laughing so hard. I see you everyday sweetheart, our memories of you are as much alive today as they were yesterday. We miss you sweetheart but we know you are in a better place now, where you have no more pain, no more crying, and you smile all the time. I want to tell you a little bit about your big sister now. **smiles** She is growing up so fast. I swear one morning she woke up and had grown out of her shoes. She is doing excellent in school, honor roll student. You would be so proud of her. She talks to you all the time when she is jumping on the trampoline or when we are driving down the road and she sees a pretty cloud, she says, "Mommy look at that Heather is following us again". I look back at her and say "Yes Amanda, sissy is following us, she never leaves us. And I know that is true. She colors you pictures all the time and leaves them at the cemetery for you to look at. Just the other day we sat on the bench that daddy took to the grave for us and Amanda and I sat there and colored a picture for you. Then we left one for you to color too. Daddy says to give you all his love and to tell you that he misses you so much it hurts. Yes my Angel, we are sad, and yes we are crying many tears, but we know that you are happy and free of pain now. That doesn't keep us from missing you though, nothing will ever change that. I would give anything in this world if I could hear you say "Momma" just one more time, but I know thats not gonna happen so I will just be happy for you in the place that you are. ~*All Our Love*~ 'Mommy, Daddy, & Amanda!!! ***See You In Heaven Little One***
Entry Date December 4, 1999: Well another year of celebrating without you with us and no matter how many years pass by us, my sweet Heather, you will always be missed. I am really at a loss for words right now. I just miss you so much sweetie. So does Amanda and Daddy. I hope you like your tree this year that we are going to put up at the grave site. I know how much you liked to look at the pretty lights and if it's up to me you will have a pretty christmas tree every year there. We LOVE you!!!
Mommy, Daddy, and Amanda!!!
In Loving Memory Of Heather
Heather's Memorial **Created On 5-1-99
Safe In The Arms Of Jesus
RCP-Rare Genetic Disorder
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