Tuesday, February 19, 2013

the gift of special needs

It's hard to believe, but in just two weeks I'll be entering my third trimester of pregnancy. Although those first three months seemed to last an eternity, thanks to the most intense morning sickness I've experienced to date, this second leg of pregnancy has flown by.

Today I went to my OB for my regular monthly check-up and saw a familiar face in the waiting room. This woman has known our family for years, and she's seen Lily many times. She asked me how my pregnancy was going, and I smiled and told her it's going great. She asked specifically about this baby- if everything looked good, ultrasounds, etc. I replied the same - everything looks great.

That's the third time this week I've been asked about my baby's health. And each time the questions are asked, I see the concern etched on the faces of friends or acquaintances. Although I am sure there is absolutely no malice or judgment behind their inquiry, the unspoken question remains lingering in the air between us.... "do you know if this baby has Down syndrome?"

I completely understand their concern. I'll be forty-five when I deliver, and my odds of having a baby with chromosomal "problems" are greater than they've ever been. I'm sure people who love us don't want us to be overwhelmed...there's no denying that an extra chromosome carries with it a greater risk for health problems than a typical baby would have. I also think that people on the other side of Down syndrome - from the outside looking in - have no idea what an incredible blessing we've been given in Lily. They might have a glimpse of that truth by reading about our lives here, or seeing pictures of Lily...but it's like describing a wonderful vacation to a far-off country to someone who's never been there. Words and pictures just don't do it justice sometimes.

I think that's why the poem Welcome to Holland meant so much to me in the first days after Lily's arrival. I felt as if I'd been dropped in a foreign land, and I was having trouble finding my way around. I didn't know if I would ever feel at home there, and most of all I felt... alone.

I've heard it said the one of the most difficult things people experience after moving to a different country is the feeling of culture shock...Wikipedia describes this as the personal disorientation a person may feel when experiencing an unfamiliar way of life due to immigration or a visit to a new country, or to a move between social environments, also a simple travel to another type of life.

Culture shock is a perfect description of those first few weeks...months...following Lily's birth and diagnosis. I was suddenly immersed in a new culture, one where new medical terms and procedures and conditions were thrown at me on a weekly basis, and if I had let myself, I could have drowned in the fear of what the future might hold. It seemed seasoned travelers had the language down as well - IFSPs, IEPs, OT, PT, SLP - but it was all Greek to me.

I struggled some days to see my baby instead of a syndrome. I searched her features daily for familiarity, and although she bore such a strong resemblance to her siblings in so many ways, there were still the unmistakable signs of Down syndrome etched in her tiny palm, and shining back at me from her almond shaped eyes. I didn't think there would ever come a day when I would "forget" Lily had Down syndrome. I tried hard to remember that a diagnosis didn't define her, but in those first months of discovering who Lily was, the two seemed hopelessly intertwined.

But there's a glorious transformation that takes place as you settle into a new way of life. Again, Wikipedia nailed my experience of culture shock with its description of the different phases commonly experienced therein: Honeymoon, Negotiation, Adjustment, and Mastery.

There were so many elements involved in that transformation from disorientation to "mastery" for me...from one side of grief to the other, if you will...but if I were to help a newcomer to Holland, there would be three things I would be sure to mention :

* Trust the Travel Agent

It wasn't an accident that you ended up in this place. Although you won't find it in scripture, I truly believe that quote at the top of my blog: "Our children arrived exactly as they were designed. There was no mistake here. They are a direct and unmistakable gift from God."

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom is no variableness, neither shadow of turning. James 1:17

Before I formed you in the womb I knew you; and before you came forth out of the womb I sanctified you. Jeremiah 1:5

For you created my inmost being; you knit me together in my mother's womb. Psalms 139:13

* Seek out fellow travelers

There is a whole community of people who have walked this way before you. Whether you find that network of friends in a local support group, within your church, or in multiple online resources such as Not AloneDown Syndrome Pregnancy, IDSC for Life, the Down syndrome boards on babycenter.com, or by following the hundreds of special needs blogs available online  - make a connection. The friendships I've made in the past three years are beyond value to me, and without them I'm not sure I would be where I am today.

* Look beyond your own surroundings...broaden your horizons

One of the key turning points for me as far as coming to terms with Lily's diagnosis, was recognizing that there was true suffering in the world, and having a child with special needs did not come close to what others were experiencing. God used Lily to open my eyes to children in the world with Down syndrome, who are discarded in orphanages and mental institutions, simply because they arrived in life with one too may chromosomes. These children aren't worried about classroom inclusion, or which vitamin supplement is most beneficial for brain development, or being called "retarded" on the playground. These children aren't even given a shot at life. I'm not downplaying the fact that raising a child with special needs can be difficult...but in comparison to these abandoned children, my grief, my suffering, is minimal.

Investing myself in the rescue of orphans through raising awareness, fundraising, and crying out to God on their behalf was a pivotal point in my acceptance of life with special needs. Had I not been given Lily I might never have known of their plight.

So have I completely mastered this journey called Special Needs ? I'm sure I haven't. I'm sure there are bends in the road I haven't seen yet, cities within Holland I haven't yet discovered. But I do know that I'm at home here now, and I wouldn't trade this experience for any other if you paid me.

From this side of things, I am above all a blessed, blessed mama, and I am grateful - yes, grateful - for the gift of special needs.


Mrs. K said...

Once again, a beautiful post. You have become the writer you wanted to be when you were so young. You have become the teacher you wanted to be. A very good teacher is always learning new things as well. With Lily as your teacher your world will ever expand way past Holland.

Krista said...

Did you see my post from last night. We are on the same wave lengths my friend!

Rochelle said...

Beautiful advice. Happy 3rd trimester. I am still keeping up just don't comment often. Love you. Want to see pg pic.

Unknown said...

Fabulous post and excellent advice!

JC said...

I loved this Patti :)

Unknown said...

I feel the same way with Emma! Great post!

Laura said...

Great post!!

crystalkupper said...

That's a great attitude to have. And love Lily's pink hat, I want one like it!

Unknown said...

Love this post!!

Danielle said...

great post.. and um... your daughter melts my heart. tonight at church... she wrapped me once again around her little finger! xoxoox

Sarah said...

Beautiful and I adore the metaphors. Trust the travel agent, enjoy the journey! :)

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Heidi Ehle said...

I'm nearing the 23 week pregnancy mark...and have been noticing that a lot of people ask if we had prenatal testing this go around. We didn't, for a lot of reasons, but primarily because there just didn't seem to be a point. We'll take what we get..and I have to say that although my pregnancy with Liddy was miraculous in a thousand ways, I am enjoying just being pregnant this time (minus the heartburn and headaches) without all the extra stress we had during Liddy's pregnancy.
Congrats on making it to the 3rd trimester....I'm right there behind you ;) Miss you on Facebook STILL (since I have no time for anything besides chasing a curious and often ornery 2 year old and nursing school!) <3 to you and Lily!