Thursday, August 23, 2012

It takes a village... to raise a special needs parent

Three years ago today, about 20 minutes ago, my youngest daughter was born.  Some of her story is here and here.  We've recently (in the last few weeks) moved from Parris Island to Camp Lejeune.  I've been doing a lot of reflecting on all that occurred during our time there.  I often think of it as "Before Olivia" and "After Olivia".  Anyone that has gone through any type of intensely emotional or traumatic event knows what that feels like.  There is a split second when everything changes and nothing, absolutely nothing, is ever the same again.

I spent most of my time taking care of Olivia that first year.  Her issues were much more severe than most children that had Prader-Willi Syndrome; and as a family we also faced additional issues because of my husband's back to back deployments and lengthy absences from the family for training and other things.  The first few months, I literally had 15 minutes free out of every 3 hours where I wasn't either caring for her or doing something directly related to her care.  I pumped breast milk for the first year of her life... 45 minutes every 3 hours.  I can not tell you how happy I was to end that, yet how satisfied I was that I did it.  She needed it to help build her immune system.  Then there were the feedings on gtubes, the special positioning, the burping, the sitting up afterwards in order to avoid giving more medicine than she was already taking in and much more.  It was exhausting.  And how was I to shower?  Talk to a friend?  Make dinner for my family?  Clean the house?  Tell my family what was happening? Most importantly, how was I to care for Amelia - whose world just crashed.  It had been the Mommy and Me show for three years; Daddy was gone most of the time and we were partners in crime.  All of a sudden I was taken away from her.  How could I do my job caring for Olivia with doctor appointments, evaluations, therapy, etc and yet still have time for Amelia?

The answer was... I didn't.  Not alone, anyway.  I have been looking back and thanking God over and over again for the blessings he gave me through the people who showed up to help our family get through this time.  I want to name them, but I'm so afraid in my weariness tonight (Rafe is gone yet again for deployment training) that I will forget someone.  So many people stepped up to the plate to offer to help; and not just offer, but to tell me specifically the ways they would/could help that I would have never thought to ask.  First and foremost, my next door neighbor Lori Fisher.  We were part of a group of friends who jokingly called themselves the "3 Lori's and a Judy".. myself, Lori Kline, Lori F and Judy.  These women were my friends, my mentors and my spiritual advisers.  I could not have asked for a stronger group of Christian women to be surrounded by during this time.  When I think about that time, I realize that never in my life have I had such experienced and wise mature Christian women around me so closely as I had during that time.  I believe God placed them there for just such a moment.  They brought me meals, helped me organize the same space again and again when I was too weary and overwhelmed to do it, talked to me, counseled me, prayed with me, ran errands for me... there was nothing that I couldn't count on them to do.  They included Amelia as much as they could.  More importantly, Lori F came every week at an appointed time for over a year to sit with and hold Olivia because I just couldn't do one.more.thing.  I slept, showered and I can't even remember what else I did. Lori was a hospice nurse, and as Olivia grew and was able to move more, she listened to the therapists and did therapy with her so I could rest.

Pam Rentz, a Stephen minister from my church did much the same thing.  She came and loved on both Amelia and Olivia for over a year at an appointed time weekly.  Meghan, a complete stranger when I met her, but sent to me on a day when everyone in the house was so sick but Olivia and I was at my wits end trying to keep her healthy, became a lovely friend and is now a pediatric physical therapist.  She too came and watched Olivia at a set time each week.  Without these mainstays in my life, I don't know how I would have had the energy or strength to care for anyone else, including myself.  It was the most emotionally exhausting and grueling time in my life.

In addition to those amazing women, there was another PWS mom, Janet G, who literally sent me emails daily forwarded from a Yahoo support group because my brain was so crispy that I couldn't figure out how to join on my own or some other reason I since can't remember.  It probably sounded kooky to her at the time but she did it and without complaint when I asked.  She called and checked on me periodically.

There was my EFMP case manager, Amy H. who held my hand and told me step by step what to file, what to ask for, what forms to fill out and what to say when filling them out.  I asked her the same question over and over again because I couldn't think straight at the time.  The programs the EFMP office offered helped teach me my rights as an advocate and parent, and how to manage this new life.  I'm still learning all the time.

I was later diagnosed with Birth Trauma PTSD, something I never even knew existed.  Without these women I don't know how we would have survived as a family.

The two therapists we've gone to - one for me and one for us as a family to recover from these three years.

My parents came to live with us, each of them taking turns staying at our house and helping with dinner, time with Amelia, housework and therapies.  Numerous other friends and neighbors helped out with meals, friendship, support.  People from my church also supported me in both tangible and intangible ways as well.   The pastor who came to the hospital and grieved with me comforted me in that shared moment more than any words of prayer could ever have done.

The greater PWS community online... answering questions, letting me vent, celebrating Olivia's successes as if those achievements were theirs, giving me advice, teaching me how to react to situations... I can't imagine going through this rare syndrome alone.  I feel empowered because of this community.

My two brothers and sister, my sisters in law and brother in law, who have never once made me feel bad for not communicating with them, keeping up my end of the conversation, or being a part of their lives while I was consumed with my own children.  My parents the same way, when they were not living with us.

The MCCS community and my neighbors at Parris Island... women in the classes who listened to my story of Olivia's birth again and again and again and AGAIN as I worked my way through my grief and anger.  For over two years, they listened... until I finally didn't need to tell the story to every single person I met.  And they never once rolled their eyes, told me to get over it, or made me feel as if they would rather be anywhere else.

Tricare... for all the problems with insurance, and military insurance, I am extremely grateful to Tricare for paying for the enormous amount of services we needed.  The army of therapists, doctors, specialists, hospital visits... without all that early intervention, Olivia (who could not move at birth) would not currently be climbing stairs and into my bed at night.  She's an amazing little fighter girl.

**Edited to add this:
Olivia's therapists... where would I be without them in her life?  And in mine?  Susan Heim, Frances Cherry, Janet Steer, Meghan Vandebergh.... through three years they were intimately involved with my family.  They worked with Olivia and with us.  Sometimes on therapies, and sometimes on life.  I remember right before I was diagnosed with Birth Trauma PTSD and was in the middle of having a mini nervous breakdown, I would sleep on the couch half watching the sessions.  They would come to my house and I would be disheveled, the house would be a mess, but they always greeted me and Olivia as if we were their most important clients and dear friends.  I sometimes would ask them the same questions over and over again as well.  At one point during this time, our speech therapist wrote a prescription or directions for me to hug and kiss Olivia x amount of times.  It was put so tactfully that she needed the physical interaction for her therapy, but I think in my heart she could see that I was feeling detached and disoriented and wanted to help steer me in the right direction.  I can never thank these women enough either... they helped take Olivia from basically a non responsive infant that could not move, cry or make any noise or indication of life to a happy, singing, playful child.  

And let's not forget the amazing NICU nurses and doctors and nurse practitioners who saved her life, cared for her, educated me and held my hand through the process.  During my NICU stay, I learned even more that nurses not only care for the patient's physical needs, but good ones also care for the emotional needs of the patient AND the family.  It's a heavy burden.  Say a prayer for your local medical team today.  They spend a lot of energy caring for strangers over and over again, often without any idea how the patients do once they leave their care.

If I've left any one out, or any category out, I'm so sorry.  I'm extraordinarily grateful for the army (or would that be battalion?!) of people who shaped me into the mom I am now.

It took a village, and it's a village that I am deeply, deeply indebted to.










Thank you with all my heart.

4 comments:

Over Yonder said...

Sweet post and beautiful girls!! You mentioned a PWS mom named Janet? When my son was a baby a lady by that name called me a few times but I can't for the life of me remember her last name. She was from NC like I am. Do you still have her contact information?

Laurie said...

Janet Gulley is from South Carolina, would it have been her?

Samantha said...

Hi, I came across your blog through a search. I am so glad I did because I am enjoying reading it. I have special needs children, too. I saw the post where you mentioned that your daughter may have mild cerebral palsy. My daughter was diagnosed at age 6 months (that's early) with CP. It's suspected that she may have had a stroke right before birth or immediately after. We'll never know. She has done awesome, thanks to Early Intervention and all the therapies that Tricare has covered. She is now in the 2nd grade and reading more than a grade ahead. I was warned about her having learning disabilities. Ha! She is definitely my miracle baby. I was not even supposed to be able to have children and then when I did become pregnant with her, I had complications that took her twin and put me at high risk of also losing my surviving daughter.
I couldn't find a way to contact you on your blog and I would love to be able to do so. Could you please email me at stewfam4 at gmail dot com? I really hope to hear from you soon.

Samantha said...

Hi, I came across your blog through a search. I am so glad I did because I am enjoying reading it. I have special needs children, too. I saw the post where you mentioned that your daughter may have mild cerebral palsy. My daughter was diagnosed at age 6 months (that's early) with CP. It's suspected that she may have had a stroke right before birth or immediately after. We'll never know. She has done awesome, thanks to Early Intervention and all the therapies that Tricare has covered. She is now in the 2nd grade and reading more than a grade ahead. I was warned about her having learning disabilities. Ha! She is definitely my miracle baby. I was not even supposed to be able to have children and then when I did become pregnant with her, I had complications that took her twin and put me at high risk of also losing my surviving daughter.
I couldn't find a way to contact you on your blog and I would love to be able to do so. Could you please email me at stewfam4 at gmail dot com? I really hope to hear from you soon.