Skip to main content

Where is here exactly?

It has all been so hard here lately, and on such a different level than the past. It's the parts of life that were neglected due to the demands of such a special needs child. What now? How do we bridge this? Marriage is so different. Somedays we dont even know how it should be. How after all this time have things gone so pear shaped? She's fine, but I feel so lost here lately. And, she falls on such a far sided spectrum of the special need scale. I find myself getting frustrated sometimes with parents with special needs children who can walk, talk -eat.. It's so lonely even amongst the special ones....

So my kindred spirit across the states has said what I've been searching for, in many ways. So if you are a special needs parent you might really want to read her post. I have several times. Little Wonders (just click)

Comments

Heather said…
I love you my sweet soul sister.

Sending peace across the great divide and wishing so badly we could just hang out together and chat and escape perhaps. Just for a bit. To regroup and recharge for the journey ahead.

One day my friend. One day we will make that happen.

Popular posts from this blog

BEAUTIFUL GREEN EYES........

Submitting to Lack of Control

When Ivey was a baby, I literally had drawers and spaces in her closet labeled, everything had a space, a place.  One special friend loved showing off Ivey's closet to newbies coming by for a visit. This level of organization mystified my friend. Secretly, I wanted to go back to haphazardness.  Justifying why I did this is simple.  At the time, I had friends helping me with my laundry, as were my mom and some night nurses.  With so many people, I found it more efficient, for all of us, to label everything.  No one had to search or guess where things belonged.   This approach to find order has only amplified with time. I have come to accept that being Ivey's mom has brought out a controlling aspect in my personality. For the record, I have always found peace in order and organization.  It could be described as controlling, maybe.  Ivey ramped up my need for order. On her hard days, or in times leading up to what I know will be hard, my need for order raises it’s merciless head. 

Ivey Elizabeth Sirmans

Ivey Elizabeth Sirmans was born Tuesday April, 25th at 5:26 a.m. She weighed 5 lbs 11 oz and is 17 inches long. She has beautiful long fingers and toes like Gwen, and her hair is dark like Matt's. She loves to be touched and is happiest when she is being held. Ivey is a strong little one who is breathing on her own. Her strength is a blessing as she will face some challenges in the future. The initial genetic testing showed Ivey has a partial deletion of chromosome 21. There are many tests pending, and as we find out more, we will let everyone know those results. She has a double cleft palate and a cleft lip which will require surgery at some point in the future. She is blind. She has had one hearing test which will be repeated due to the noisy NICU. The aortic valve in her heart has 2 leaflets instead of 3, but despite this, her heart is working wonderfully. Currently, she has a feeding tube in her nose, and she is learning how to nurse from a bottle. Once her feeding is successfu