When Life Isn’t What You Thought it Would Be (Part 2)


Special Needs

When the number of potential adoptee families dropped to one, I wasn’t surprised. I was told they would be contacted and a meeting arranged. After I got off the phone, I sat in the hospital looking down at Eva in my lap and wept.

Tears rolled down my face onto hers. Nurses stopped by to ask me if I was ok, and finally one offered me a private room to spend some time alone with Eva and my growing puddle.

I was devastated but I felt like if I could give Eva a solid family who would love and care for her, I would be doing the best I could for her.

When the family fell through, a mix of panic and relief surged through me. I firmly believe I would have gone through with an adoption. I would have missed that little girl every day, and who knows what kind of life I would have had, but I felt like she would be ok and that was the main thing. When it was taken off the table as an option I was hemmed in, but had been relieved of the permanence of adoption.

The next weeks were spent organising a foster placement for Eva. Over this time I received a couple of pieces of news which began to change things for me. Eva’s MRI scan results changed to reveal an almost normal frontal lobe, and the ophthalmologists thought they might be able to return sight to her eye (this turned out to not be true). Each time I received a piece of news like this my spirits lifted and I felt like, that’s it, I’m keeping her. But over a couple of days the feeling of despair would return and I would go back to thinking foster care was a better option.

The day arrived that Eva was due to be discharged. The plan was that she would come home for six weeks. At that point there would be a family conference where we would agree as to what would happen with her future. She would go into foster care which could last up to a year before they could place her as a seriously disabled child in another form of foster care. If anyone wanted to take Eva out of foster care they only had to give seven days notice. I held onto this fact and repeated it to myself over and over. Seven days. Seven days. Seven days.

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The feelings of panic and sheer desperation that hung over me at this time were palpable. My sleeping was erratic. My eating had to be enforced to happen. I desperately wanted to be Eva’s mother, but felt like Eva had to make miraculous progress before I would flip back in the opposite direction and take her back. I was aware how this didn’t seem fair but I couldn’t help it. I could barely understand the workings of my brain, let alone control them.

Before Eva was due to be discharged her father and I separated. It only bears mentioning because it affected how I saw my life with and without her. My decision now also involved an attention to finances and my ability to take care of her by myself.

Eva and I shared six weeks together where we got to know each other and bonded. I continued to express and she had three months of expressed breast milk. I started to look at the foster care time as a chance to regroup. To get my head straight and figure out if it was going to be able to raise Eva. I needed to answer some logistical questions before I made any final decision.

Was I going to be able to work?
Would there be childcare for Eva with all her additional needs?
Could I afford to live with just the two of us?

I knew I was not in a fit state to take care of her. My question to myself was whether I wanted to be, and how long I would need to get to a place where it would be possible.

Then came the day that she went into care.

There seems no way to express how this felt without resorting to cliché. I could feel an elastic band between us, stretched taut, but not broken. Whenever I thought of her, or looked at a photo on my phone, I felt the band twang and pull at me. I felt physical pain at being away from her and ached thinking about what she was doing at each moment. When I woke at 2am for no reason, I imagined she was crying and needed my care.

I was allowed to pick up Eva and take her for afternoons and then whole days. When I wasn’t with Eva I was investigating my options and meeting with support people and potential day care options.

A decision was forming in my head, but I wasn’t brave enough to quite hit the accelerator pedal. I flip flopped and played mental gymnastics with myself until I was exhausted. People told me “there is no right decision”. Which sort of helped, except I didn’t believe them. I felt they all had their idea of the right choice, but held back for fear of upsetting me.

Then my parents sent me away on a holiday with my sister. We kayaked. We swam. We surfed. We walked. We read. I felt for the first time in months a sense of calm. And it wasn’t because I was far from Eva, and far from my worries. It was because the distance and distraction had allowed my brain to work through the last of its concerns.

I wanted Eva back.

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After waiting for the scales to tip back I finally realised it didn’t matter. I didn’t care if cochlear implants would give her hearing (of course I care, it just wasn’t a deal breaker anymore), I wasn’t waiting to see if she could walk before I loved her. I already did. I didn’t need her to be better. The scales were already tipped. She was my daughter and I wanted her back.

When I got back to New Zealand I started the wheels in motion. Within a few short weeks Eva was back with me.

Life being what it is, things weren’t smooth to begin with. On the night before Eva was due to come home with me she developed bronchiolitis and what followed was four weeks in and out of PICU and the children’s ward. But even so, she was with me. I was taking care of her. At her side.

Since Eva has been home with me I have had my decision affirmed over and over again. Every day my love for this little girl grows. Just this week she blew me away with her determination during a session with her Visiting Neuro Developmental Therapist (VNDT). I had tried to tell the VNDT the last time we talked that Eva has been rolling onto her side on both sides. She heard me but I don’t think she believed me. Maybe some parents see a smile, and presuppose a clever thought. See a twitch and call it a roll.

I so wanted to be able to show her how far Eva has come since we got out of hospital. I needed someone else to see it and validate her progress. Her VNDT didn’t hide her enthusiasm when Eva rolled onto either side using her head as a guide, rather than letting her head turn last. She put her into the tummy position and Eva obliged and lifted her head up, not far, but more than she has in the past.

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Then her VNDT put Eva on her back and then on her side and put some wind chimes in front of the Peanut’s hands. Tentatively, Eva reached out and grabbed at the cold metal, clinking them together to create music. I’m not so naive to think Eva knew she was making music, or that she understood what she was doing, but just seeing her reaching, batting and playing was amazing. Seeing her trying to interact with the world around her made me light up inside.

I felt a smile creep across my face and just felt this warm wave of pride coarse through me. I am so proud of this little girl. I couldn’t have felt any happier in that moment than if she had sat up and crawled across the room. I silently thanked myself for making the decision to take her back and knew again that there was never any other way for us to have gone forward. It doesn’t matter if she learns to talk, or walk, or even crawl. This little girl is trying her hardest. And I will be there when each and every milestone is accomplished. No matter how many or few there are.

I’m finally in a place where what Eva is doesn’t matter. She is who she is and I love every part of her. A part of me feels guilt that I ever doubted this fact, but I also know that because I gave myself a break and gave myself the opportunity to choose this choice, I got to see the alternative and know it wasn’t for me. I had the opportunity to know this is what I want. I don’t feel trapped, or obliged or burdened. I feel lucky.

People told me before I accepted Eva for who she is that I would find joy in the little things. I silently scoffed at them and cynically thought that the people who said that did so because they didn’t have the excitement of the big things. They made themselves feel better by finding enjoyment in the little things. They had to. Otherwise life would be miserable.

But I was wrong.

Since Eva has been back with me I find myself looking at the world differently. I see a beautiful view and just feel awestruck. I watch Eva smile and feel a warmth and happiness I haven’t experienced before. It’s not that I see that view or that smile and think, “this is as good as it gets, I better enjoy it”, it’s that suddenly those things are not small things anymore. There are no small things.

Life is not about waiting for the big things to happen. We don’t know how our lives are going to pan out and only the most fortunate will win the lottery and never have tragedy or grief befall them. I don’t think that’s even possible unless you live your life without loving anyone or anything.

I know these revelations are not new or revolutionary. Countless people must have had the same realizations that I’m having after life changing events. I guess what I’m feeling most fortunate about is that instead of feeling bitter that life isn’t what I thought it would be, I just feel thankful for what it is.

I may not have the picture I imagined in my head growing up, but I have a lot. And I’m lucky.

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So this brings us to now. I don’t want to scare anyone. Or let myself off the hook for my decisions. I want you to know, if you’re reading this and you’re in a position that is even remotely similar to mine, that I felt this way, and I came through the other side. That I reached the lowest point I could go, and I came back from it. That I like where I am now, even if it wasn’t what I had planned for my life. That I didn’t think I would get here, and didn’t even know if I wanted to get here, but I did. That it’s ok to feel rage, and sadness, and grief, and love, and the desire to run away, all at the same time.

I know there are many parents who have special needs children who may not have had the same feelings as me. They might have bonded instantly and never thought twice about keeping their baby. I admire and respect those parents a great deal. But I’m not one of them. I want you to know, if you feel like I did, that I was there too. I scoffed at the clichés and platitudes. I raged whenever someone tried to show me the good, the silver lining. I wasn’t ready. But I got there. And I’m so glad I did.

When the hole you have fallen in spits you out, you may not recognise the world you’ve been spat out into. But like I said, it may not be so bad. You may even grow to love it.

Follow Tessa and Eva on their sweet journey at www.theoneinamillionbaby.com 

Story written by: Tessa Prebble

This story appeared first on Real Imprints.