Being a mom to special needs kids isn’t easy!! My Journey to motherhood



Being a mom to special needs kids isn’t easy, being a parent period isn’t easy.
You can spend a life time wondering why me, why my children, what did I do wrong?
Did the Dr do something, was it their father’s age, how bad will their life be,  how hard will mine get?

 

I have two daughters’ ages 10 yrs old & 4 yrs old. One has sensory issues, and life threatening  allergies & one has autism.  I was 19 yrs old when I had my oldest, and 26 when I had my youngest.

 

With my 1st born I was very sick up until the 4th month, then it was smooth sailing. And a picture perfect pregnancy and birth. She came on Dec. 2nd that was also her estimated due date. I found that to be very neat!

 

Even before we brought her home she was spitting up a good bit, the nurses attributed that to me not burping her well. I myself did not agree with that and wondered if it might be something more, as her dad had a blockage at birth that made him do that then it became projectile he ended up needing an operation to correct the blockage so I feared that. The Dr’s & nurses told me I was just a worrisome first time mom.

 

After two weeks and many, many trips to the Dr’s & ER and much projectile vomiting I insisted they call in a specialist to check her out she looked so sick & dehydrated & didn’t have tears, she didn’t even wet or pooh, yet the Dr’s kept blowing me off. I lost my temper & kept insisting they call in a pediatrician to check her out. So they did he fed her one bottle... I kept telling them I thought she had the same blockage as her dad had when he was her age. The Dr they called in confirmed my belief in one bottle feed & a few test. We then got transferred to Women’s & Children’s Hospital in WV she had surgery the next day ( I can’t ever recall being so scared, mad, sad, & the crippling feeling of helplessness brought me to my knee’s!! I came so close to passing out after I handed her over to the anesthesiologist) had the Dr kept waiting she would have starved to death.  I was so glad that she was getting the help she needed and at the same time I was fuming at the Dr’s lack of care & deafness to my concerns. When we got back home on Dec 24th The Dr’s kept saying that they was sorry.  I later divorced and my little one and I moved to VA here I met my husband on Easter, we married a couple months later… my baby is now 3 yrs old how time flies!  Even with all that, that has happened in those past few yrs I knew I wanted to have more children. I love being a mom!  I ended up pregnant right away I was so happy & shocked. I soon lost the baby and once again felt so hurt, mad, sad, scared. Why what went wrong? Everything with my daughter’s pregnancy went picture perfect!

 

We had no answers we still don’t know 100% what went wrong. I took time to recover and with the Dr giving the go ahead we tried again. Once again faster than we could blink our eyes I was once again pregnant. We were pretty scared and very happy. We took each day one step at a time, with any little cramp or twinge I felt my heart skip a beat. These pregnancies wasn’t like my first I was sick with my 1st like clock work every few hrs you could set a clock by it 6 am. 9 noon and so on… I got sick at my stomach with my 1st baby before I even new that miss monthly was late. With my other pregnancies well I knew I was pregnant because my breast got tender, I was off feeling and missed something.

 

The 3rd pregnancy I started spotting again I didn’t go to the ER this time as I did the last time. That was more painful than I could ever picture the care was cold & uncaring! With the 2nd pregnancy they did an ultra sound to see if I had lost the baby or is it was just early spotting that might end we seen the flicker of the heart and what looked like a tiny little bean with what sort of looked like arms and a tail, still it was my baby & it was beautiful!! While I sat there in awe… we saw the flicker stop. My heart broke I was so numb I couldn’t even cry the tears and anger, disbelief came soon after. I was around 8 to 12 weeks along.

 

Any way with my 3rd pregnancy it seemed the baby stopped growing at around 6 to 8 weeks I took a longer break and we tried again to have the same thing happen all over again, Know let me tell you if I wasn’t doing some soul searching at this point! I wanted answers, I wanted to know if a higher power hated me. My husband had no children of his own I wanted more than life to give him a child so he could feel the wonders of being a parent. I felt like I had failed on every level under the sun. When I miscarried I was so sick it took time away from my only child, she knew something was wrong she tried to fix it she lifted my spirits so much. Had it not been for her I think I could have laid right there and let the grief swallow me whole!  The Dr’s at this point did DNA & Chromosome testing on my husband and I it wasn’t cheap we had to go through lots of red tape & but kissing to get the testing done we had to wait what seemed like forever for the results to come back. When they did we were still in the dark we had not found out a darn thing. I was so mad. Finally my OBG-YN said well we can try one more thing but your insurance will not cover it I was like OK and we talked about hormone replacement. I didn’t have testing done to confirm it but I did do loads of research on progesterone it is the hormone that readies your body to be able to carry a pregnancy up until the 10 week then the placenta takes over making enough for you and baby/babies.  After all when I got pregnant with my oldest daughter I had just stopped taking the Depo-provera shot for birth control its main hormone is progesterone  so maybe that is why I had no problems with my 1st pregnancy?!? Or maybe it was because I was much younger… who can say for sure.

 

I waited almost a yr and with much fear and hesitation we tried again. I was put on the hormone replacement and on April 23 I had my second daughter I was so happy to have made it full term my head was spinning!! I was in early labor for a long time and very slowly dilating  my labor would start and stop I nor was baby stressed by this so the Dr’s says well lets monitor you a bit once a week and you go home & rest. I went into labor the first time on April fools I told the Dr I would cross my legs & stand on my head but I hope she waited until after the 1st to come LOL  then as fast as it started it slacked way off then stopped. I was happy.

 

I also had lots of hip & pelvic problems with this pregnancy she was so active... like 20 times more so then with my oldest. My belly looked like it might pop at times.
After her birth I had hoped I would get released as I did with my first 16 hrs after her birth, but that was not the case at all!!

 

My first was born all natural no epidural or anything I wanted one I just didn’t have time they broke my water & my 1st was born with in 20 minutes I could not believe it!! I was up and walking shortly after.

 

I did how ever scream my head off while in labor it was so fast and hard there was no transition it was more like an atomic bomb!

 

This played in my head a lot after I got to full term they always say your second come faster then your first. I was almost scared to cough or sneeze (Joking) but we did brush up on what should be done in an emergency home, car or store delivery. LOL Hey you never know?

 

So I get hurting really good the night of April 22nd it was not letting up so off we went to L&D, They kept me this time and 19 long LONG hrs later I welcomed my second daughter into the world. I had an epidural with her it was great! No pain. But what I didn’t know or the Dr’s was I was bleeding to death my placenta tore and was still attached, they had to do an emergency manual placenta removal  ( I wont go into those details feel free to Google it) They didn’t have time to give me anything for pain so I had a barbaric surgery done with no pain meds & fully wake! After I almost broke the Dr’s neck & took out about 4 nurses they drugged me I woke up 12 hrs later wondering what in the hell happened it seemed like a bad dream.

 

Before they did that though and how they knew there was a problem I failed the potty test & passed out in the bathroom in a pool of blood ( They had 3 nurses with me 2 in training bless their hearts I wonder if I scared them out of nursing) They got me back to the bed & called for a crash cart at this point it was as if I was watching all this unfold through a picture window. The nurse kept doing a sternum rub on me & ammonia & yelling my name I would come too look at her and say Just let me sleep I just want to go back to sleep. After one more hard rum a pinch & more ammonia and the words If you close your eyes you will never see your girls again!! I opened my eyes and my fight to live began I fought hard!!  I got to stay in the hospital for a week and few days it took me almost a yr to fully recover from the blood loss. But I had 2 wonderful babies!! That was enough to see me through. That and my wonderful husband who nurtured me back to health had it not been for him I think I might have dies after being sent home I couldn’t hardly walk with out help.

 

After facing all of this I felt like I might be able to walk through fire climb the highest mountain I was happy that I was able to come out of those hellish times with my chin up and much to look forward to!  You probably wondering why this has anything to do with being a mom of special needs kids, but when you have a child with special needs all the small things are BIG even ones that might go un-noticed for a short time at some point come into light, and in some small way become a stepping stone to our tomorrows to come.
Even with the hormone replacement working I still question myself a lot there are so many why’s why this & why that. I do lots of research before going to a Dr due to the past experience of coming close to loosing my 1st born. At that time in my life I lost trust in Dr’s. I don’t doubt their smarts I doubt their commitment in finding the true answer and not taking short cuts or writing folks off.

 

When my 2nd born came home she was OK she was what I would call high maintenance, or so I thought but I wasn’t 100% sure because with my 1st she slept a lot in those first months due to her surgery, and pain. So I had really no normal experience to go on so once again I followed my gut, it has yet to steer me wrong!  I mentioned to her Ped. How she seemed to fuss all the time even in the car she got worse, the only way she felt OK and calm was in her swing with load white noise, The said it was colic OK I heard of how hard that was & it seemed to be a bit fitting though so Colic it was, but wait colic doesn’t last for months on end I’m talking like six month!! After she started pulling up & moving about and talking a bit the fits of screaming for hrs stopped!! But she still didn’t like to be held or cuddled at all she would come to me for mummies ( to breastfeed and that was it) I noticed she walked on her tip toes, and had an over reaction to sounds & touch, and a major under-reaction to pain, I made mention of this to her Ped it was wrote off. As nothing all babies developed at different rates. I wasn’t happy with this answer at all.

 

We relocated and found a family practitioner and MD that we now see, at 18 month old my 2nd born started losing her speech. And started having some really odd behaviors… You can read more about that her under the search of Autism on my blog. So I got wondering if all the hell I went through that had opened my eyes and made me even more thankful for what I have played a roll in me ending up with special needs kids. I don’t see autism or having a child with it as a hell at all. I see my daughters as the best gifts ever to have been given to me. I would not change one thing about them they are who they are and in that they are great and they have helped me grow in ways I could not ever have dreamed. They have made me who I am today. There is many battles we fight in life to better our lives and that of our children rather they have special needs or not. I until just recently was still wondering why what happened, happened. I think in some way it was a test to see if I could hold up to what it took to be the mother of 2 special needs kids. I’m lucky to not have to face an illness that would make my children unwell or even take them from me. I’m so thankful for that. But something in me says to all the parents & caregivers of these children who fight every day to make it through the day rather it be fighting to breath or fighting cancer or fighting having a sensory over load leading to a melt down, to be chosen to fight this fight with them is also a special gift, even though at times it may bring us to our knees and make us question every aspect of life itself and the Creator of it. We will question why, what, when, where, and how. But one thing we will never question and is the love we have for our child, we will learn to take each moment and make them last forever, never taking things for granted, sometimes all I have room for in my mind or the ability to say is WOW!! I stand back and look in awe and at times I can not fathom that it is really me walking down this path that is my life, it is one with many mountains & cliffs it has many blind spots, but it also has some wonderful views that are breath taking.

 

I guess in writing this very long winded thought I just wanted to say I think parents are hand picked like a ripe fruit from the vine, we are given our gifts when we are strong enough to carry them home. And when we are able to learn from each hurdle we jump and we can learn to feel the pain and rise above it to see the joys. So if you have ever felt pain that has broken you don’t look upon it as a weakness but a stepping stone to a stronger wiser you!

 


My Joys







 

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Posted by Angela at Tuesday, April 22, 2008 9:29 PM
Categories: Autism,life,Family

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