Home > In Their Own Words > In Their Own Words – Meeting My Baby Girl

In Their Own Words – Meeting My Baby Girl

This is a blog post by Rachel, a military wife and mother of two children. Her daughter RM was born with a 4q Deletion and has an autism diagnosis. Rachel was part of the ‘Light the White House Blue for Autism‘ campaign and has a blog,’Welcome to StimCity.’ 

Finally.

It was the longest wait of my life in that Recovery Room, but I was finally brought to a private maternity room on the floor.  Within minutes, a nurse was wheeling in my beautiful baby girl.  As she passed RM to me –I can still feel the sensation – my heart swelled with a new kind of love, one that would carry me through a journey I had never guessed was coming.

It would prove to be a day filled with mixed emotions, most of which I was unable to recognize at the time.

I can recall purposefully not looking at the pinkie finger.  Instead I studied every other inch of her.  I can also admit that her overlapping toes were undeniable.  However, it was far easier at the time to believe that any kid who had spent the last several months literally sitting on her toes would be a bit scrunched up in that area.

But then there was the matter of her very tiny, nearly non-existent chin and very tiny mouth.  She couldn’t latch on to my breast to feed and after failing to breastfeed my son, I really wanted to find success this time around.

It was a no-go.  She just couldn’t do it.

The nurse came back with a bottle and after several attempts at that – long periods of sucking that barely drew a drop from the nipple – panic was beginning to set in.  She would cry of hunger, but the cry was a sound I had never heard before.  Muffled.  Like there were cotton balls in her throat.

Where the hell was my husband?  Why was I sitting here all alone with this baby and getting nowhere, having no answers and feeling that I was sinking into a dark abyss.  Call it denial, postpartum exhaustion – whatever – but I was not bonding with this child.  Instead I was terrified.

I don’t remember much of that first afternoon into evening.  It would be 24 more hours or so before my SGM made it to the hospital.  In the meantime I was alone.  I had sent RM to the nursery so that I could rest.  But in reality, I think I had done so because I was unable at the time to process that my baby’s entrance into this world was a far cry from joyous.

I only needed to make it through that night.  Then I would see my soldier again.  And he would make everything alright.

The next day, when my SGM walked into my room, my world was whole again.  He would prove to be the strongest, most faithful soul I had ever known – from that first moment he held her, he knew in his heart RM is perfect just the way she is.

A soldier who commits his life to serving our country innately possesses certain qualities that few of us civilians can fully understand.  SGM has never faltered in his belief that even when the mission is critically compromised, remaining steadfast and courageous can still get the job done.  Failing to follow through is not an option.  He has applied those same principles to RM, and in doing so has taught me to keep fighting.

If you haven’t done so, please support the Caring for Military Kids with Autism Act – HERE

We cannot change the world without first being the change we seek.

Thank you.

Love,

Rachel

For more on Military Families and Autism Advocacy please visit Autism Votes

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

 

 

  1. July 23, 2011 at 12:49 pm

    What a touching story! Your baby girl has the parents she was meant to have. She is perfect just the way she is and will teach you so much! At least you knew from the outset that you were dealing with a special child and could set out to help her in any way you could. Some of us have had to struggle for years with school and social problems, not quite knowing what’s not working. Knowledge is power. All the best to you and your family!

    • July 24, 2011 at 10:12 pm

      Thank you so much, Debbie. I agree. We have been truly blessed in so many ways. Though it was such a shock to learn of the 4q diagnosis at birth rather than having a head’s up – it did set us on a path of knowing we’d have to be vigilant. There was nearly no information available even just five years ago about 4q deletions, so that gave me a great foundation for learning how to research and advocate for everything RM needed. A true help when the autism diagnosis came and the fight turned toward the school district.

      Thank you for sharing in our journey!
      Rachel

  2. Julie
    July 23, 2011 at 1:37 pm

    Oh my goodness, what a precious story. God bless your family.

  3. July 23, 2011 at 2:40 pm

    Looking at her picture…your husband is right. She’s beautiful just the way she is.

    • July 24, 2011 at 10:13 pm

      She’s perfect ;0)
      Thank you, Karen. I’m grateful for the kind words.

      Rachel

  4. July 23, 2011 at 7:17 pm

    Best story i’ve read in a while. You and your husband are special people who have been given one of God’s angels to care for. God has blessed your family with a unique gift. Your initial feelings are normal ,after all you are human.Love her and she will bring you a joy that you could never imagine.<3

    • July 24, 2011 at 10:15 pm

      Carol, I am thankful for your supportive words. I do believe she was the best gift God could have ever blessed me with.

      The autism community and the 4q families I have met along the way are priceless.

      Rachel

  5. Noreen
    July 24, 2011 at 11:12 am

    I find Midwifes so much more “in tune” with Women and the child birth experience. They understand all those “mixed emotions”. You should always have some one there with you for support (i think they are called nula’s?). It truly helps!!!! God bless your baby girl. The Dad did make an awefully BIG sacrifice. : ( Surround yourself with some good women, if the Dad can’t be present. I’m a big believer that BOTH parties, whether Married or Not should be present. It’s too MOVING and Deep of an experience not to witness.

    • July 24, 2011 at 10:18 pm

      Noreen, what a great perspective. My sister was with me throughout the birth and she was a Godsend to me. Support is key. I have been blessed beyond measure. Though my husband and I wish he had the gift of being present for her arrival, nothing has taken away from the beauty of RM and the enormity of what my husband’s sacrifices truly equate to. I am grateful for our soldiers who do what they do for the good of all of us. Missing life-events and everyday moments. They are all heroes!

      My best,
      Rachel

  6. beth lewis
    July 27, 2011 at 6:54 pm

    i learned 2 yrs ago that my now 5 yr old son has autism.. my husband drives a truck and is not able to be home with us but 4 days a mth. i was standing alone in the dr.s office when i got the news. i can relate to how you felt.. but one thing my aunt told me that i will share with you really helped me then and now.. God gave you this beautiful child cause he knew you and your family could love and care for her like no one else could.. she is a gift. special made for you.. and only you and your family have the strength to do rite by her.. thank you for shareing your story.. and God bless you and your family..

    • July 29, 2011 at 11:13 am

      Beth – thank you for sharing. You obviously are a strong woman and mother. You were blessed the same as I with the unique and amazing gifts that are our children.

      God bless you as well. Thank you for your kind words!
      Rachel

  7. Wendy Bradford
    July 31, 2011 at 9:20 am

    midwifes are called Doula’s. One in our town calls herself a Labor Doula- professional support for labor and post partum.
    I have also read that breastfeeding populates the good bacteria in the gut which sets up the whole immune system correctly. It helps prevent gluten allergy and I think it can decrease autism too. You can read some good information on “cooling inflamation” a scientist who has been studying this. Google it.

    • August 1, 2011 at 10:49 am

      Thank you, Wendy. Unfortunately, many children born with chromosome abnormalities like RM have physical or mechanical deficits that make breastfeeding extremely difficult.

      I do believe breastfeeding is a wonderful choice for those that can make it work. I was able to do so for my son for the first three weeks, and I truly believe it made a difference even in that short period of time.

      For those who choose not to breastfeed, there should be no guilt associated with that decision, no matter the circumstances. All of our babies come into this world on their own path. Whatever choices we make in caring for them, the love we show them is the best nourishment.

      Take care,
      Rachel

  8. August 15, 2011 at 5:54 am

    Wishing all the best to your baby girl and you…

    Nathalie

  9. August 30, 2011 at 8:22 am

    oh my, thank you for sharing this, this is so inspiring!! your baby is so blessed to have you guys.. wish you all the best and God bless your family and your baby!!…

  1. August 18, 2011 at 9:45 am

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