“I’m a challenge to your balance”


“I’m a challenge to your balance” is part of the Wonder Lyrics from a the song performed by Natalie Merchant. These few little words evoke questions, emotions and thought into my new world.

My blogging today is fueled by emotion. Emotion seperate from those that come along after childbirth… you know those “emotions” that every bad mood is blamed for…. the “hormones raging”. No my emotions on this stuff is just plain reality at it’s finest.

When I gave birth in North Carolina to my first son, Mason, I was 9 Hours from the majority of family.  The distance played it out in serveral ways, some days it was nice to have the privacy but most of the time I wanted to be closer. Having Mason made me appreciate family so much more than I already did. So it wasn’t too much of a surprise that when he was 8 months old we moved back.

Ok …rewind, when Mason was 1 month old,  We took the trip home to see the family. The trip was bit of a last minute one, but the news of my arrival home with Mason spread quickly. I had family at the doorstep within 24 hours of my arrival. My Aunt couldn’t wait to hold him and the grandmother took a trip up from NJ shortly after. One Sunday afternoon their wasn’t a free spot on the couch as everyone gathered around to enjoy our son. I thought it was absolutely wonderful. It made me miss home even more, I loved it.

For those of you who have followed my blog know that some family members have taken a step back from my life,  whether they didnt support our decision to keep Grady or just made a personal choice to detach. It is a terribly sad reality to our diagnosis, mostly for them.  So here we are living back home with our  newest little bundle of Joy that is Grady, and all those family members that poured in to see Mason, haven’t called to come and visit us now. In fact within 1/2 mile from my doorstep live 14 family members (outside my immediate family (mom& dad)), as we are nestled upon old family farmland. 2 of those family members have dropped by. 2.  Yes I got a card or two, but I can’t help but wonder if their is apprehension to visiting. Will their be apprehension with others….

That is why the lyrics keep popping up.  Does the idea of Down Syndrome challenge your spiritual balance? Does the idea of Grady within our family challenge your Picture Perfect balance? Does the idea of Down Syndrome challenge your comfort level? Possibly. Maybe. Yes. Don’t know.  But are we still family? Yes.  I guess it bothers me because I thought all of my family would come through instead I feel an uncomfortable distance between my house to theirs. A silence.

On the beautiful side of this Blog  entry is the other family I see forming around me everyday. I don’t feel the need to lean so hard on my family during those rough times in life anymore, because of God and his Perfect Timing to Save my Husband, My marriage is stronger than ever and I have my husband to lean on now. My relationship with God has opened up to another level and my relationship grows constantly.  My immediate family never fails to show up when the going gets tough (thank you mom and dad) Because of loving and supportive church family that we have been working on becoming a part of, I have witnessed and received unconditional love from almost complete strangers. Because of Grady I have received blessed emails and letters of support from T21 mommies all over the country. I have had friends who have gone out of their way to drive all the way from NC to meet Grady. I have a cousin & my dearest friend who will answer her phone at all hours of the night and day to be there for me. I have wonderful women from where I work who reach out with support and encouragement. I am surrounded by Love. But most of all and the most beautiful side of it all is that I have my Grady now, I have the little man that 90% of American would have chosen to terminate. I have the little man who is absolutely wonderful.

I am going to stop fretting tonight about those so close but distant family members. God will work on them one by one….

Grady doesn’t challenge my balance. He has brought Balance to my life. He is our balance.

Update:

Grady gained 8oz this week, and is weighing in at 7lbs 11 1.2 ounces! Yay. He even grew a half of inch and the best news of all …. for the past two night he slept 8+ hours. Can we get a AMEN!

Gooooo Grady!!!!

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12 thoughts on ““I’m a challenge to your balance”

  1. Aunt Jess says:

    I wouldn’t trade the time I spent with you guys and perfect Grady for anything!! I miss you all already! YAY for Grady continuing to sleep so long, it definitely makes for an easier day. Keep making that little boy grow like a weed! You are doing a wonderful job and your family is very lucky to have to watching over them! XOX

  2. Erin says:

    I think some people have very stereotypical notions about what a baby with DS is like and it makes them nervous. The difference makes them nervous. But the thing they don’t realize is that a baby with DS is no different then any other baby and their fear is unwarranted. I had a relative that was afraid to hold my baby because she thought he would be more fragile or that she wouldn’t know how to soothe him but it was completely unnecessary and she realized that as soon as she held him.

    I am so sorry that some your family is treating you that way, it is heartbreaking. Unfortunately as I have noticed with my Lucas, is that he either brings out the best in people or the worst.

    Hugs to you, glad Grady is doing so well.

  3. Christine says:

    AMEN…Don’t let anyone take away your balance!!! I have
    learned though the years that family means sooo much more than being related to someone.Family is made up of the people who love and support you unconditionally!!

  4. Pat says:

    Oh Yeah! You can get an AMEN! Gooooooooo Grady!
    Sleep is a good thing! …a very good thing!

    I’ve been staying away because I don’t want to bring “bugs” from the outside world to your house!

    You let me know when we can visit — otherwise we wait for March 28th!

  5. Emy says:

    God is so good. Grady sleeping so long through the night and not yet a month old. Fantastic!!! I will comment on how some family members can become distant in another format. I know personally how much that can hurt. All we can do, Erin, is pray for them. It is they who lose because of their “ignorance” and I’m afraid that is what it is that keeps them, and probably will always keep them at a distance. They lose the wonder that is Grady and they lose out on seeing the face of God in Grady. We are the ones who are blessed because Grady and Patti, and so many others like Grady and Patti reflect God’s unconditional love so perfectly and so beautifully. Let those others go, and don’t spend time fretting over their loss. It’s not easy to do, but you have those voids filled with so much more, eventually you will see that you have gained so very much more than you have lost.

    God bless you, Grady, Mason and Paul…and all of those who rejoice in the wonder of Grady, God’s beautiful gift to all of us.

    Emy

  6. Brenda says:

    You always put a smile on my face when I read your blog. Having a baby is hard enough in it’s self let alone worrying about other people!!! When those people are your family that’s tough. You look like you are doing very well. Sometimes when someone hurts my feelings (even a family member) I look at my boys and remember that once I was an advocate for myself now I’m their’s full time! Grady looks awesome! I feel the love through the computer!!!!!!!

  7. Tana says:

    Grady is growing so quickly already and is soooo adorable.
    Do not worry about your family members that have not attempted to visit. They will find their way to your doorstep. God will show them the way when it is time. He has it all planned out and there is a reason for everything.

  8. Libby says:

    Erin – I’m so happy to have had the chance to finally sit down and pour over your blog {such beautiful boys you have, lovely honest words, and strong faith!} Grady will no doubt serve as a balance for your family. Our Charlie has. But I have also learned that children {Down syndrome or not} all challenge the balance we have worked so hard to create.

    Be patient with yourself. You are a new mommy again. Enjoy those sweet newborn moments. You are doing so well. Be strong, real, and honest. People {even those who are still hanging out in the background} will take their cues from you – and no doubt they already are, as it sounds like you and your family have been enveloped in a circle of love and support. And that my friend, is a jumbled mess of love and advice from one sleepy mom to another! 🙂

  9. Mom A. says:

    I am listening! I hear you! A mother feels her child’s pain and frustration! Good News! All things work together for good to those who love God! Romans 8:28 I love you so much. Mom

  10. Kelly says:

    Erin, I love how real and honest your writing is. Our children with DS truly are our balance. I am so greatful that I have been one of the chosen ones….and I wouldn’t trade Landon for the world. This journey has led me to a new, warm, welcoming and amazing family, our T21 family, and I feel so blessed to be part of this community. People who genuinely want to travel with us. Grady is absolutely beautiful and I am looking forward to sharing this journey with you and your family.

  11. Melissa says:

    I’m sorry to hear your extended family has been absent, but like you, I have come to love and depend on my new online family. The support I’ve received from other bloggers and T21 mommies and been wonderful and truly appreciated.

  12. Margaret Francke-Olano says:

    God works in mysterious ways. I looked up the song lyrics as I love that song and was thinking of it. It led me to this blog. God bless you! I love your picture with your son. When I was expecting my first son they tried to get me to do tests to see if my son had Downs Syndrome because of my age. I started to worry and stress over the whole thing and told them to leave me alone and that whatever child God gives me I will love. I did no testing. I am a speech/language pathologist and have worked with special needs children all my life and love all children. What kind of person would not love all children? They did the same thing with my second child and I told them the same thing and they were even more upset with me as I was even older.

    My dream is to have a chance to still have more but, I am turning 47 and for one thing can just imagine how they would bother me!!

    People like you are too rare. You are a special gem in the world-truly a gift from God. Keep loving your son and he will give you so much love back-better love than many adults are capable of unfortunately. It sounds like you are already finding that out. Just find out as much as you can as early as you can about how to do a lot to stack the odds in your son’s favor when it comes to early intervention. You will be your son’s best advocate for life.
    There is much that can be done early especially to help in speech/language/feeding development and oral motor development. Get tons of advice from all the top expert, read books and get more than one opinion and find therapists who have had enough experience in doing speech/language and oral/motor therapy with Downs Syndrome children. They have their own particular needs as God made them special just like he made all of us special in one way or another. Of course you will want to look eventually into OT and PT too. I can just tell you that based on my experience, expertise and self-study (25 years in the field) that it’s best to do everything you can as early as you can. In no way stress over it all-he will feel your stress-just find support which often has to come from other (outside of the family) sources-support groups with other Mom’s, and agencies with truly caring staff. Other Mom’s who have Down’s syndrome children will understand you better as a person who walks more closely in our shoes understands more-not all -but a lot more .

    So far God has blessed me with 2 healthy boys. Maybe so that I could continue to have the energy to help other children the way he allowed me to be trained to. He is the only one who knows the answer to that!! Best of luck to you and God bless you all.
    Maggie

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